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- CommentAuthoralcyon73
- CommentTimeAug 9th 2009 edited
I was diagnosed with essential cryoglobulinemia (I'm negative for Hep A, B, C) last December after I landed in the hospital with cutaneous vasculitis, skin ulcers and internal bleeding. After nearly a month in the hospital I was released and spent a couple of weeks convalescing and returned to work. I'm presently on prednisone and am slowly tapering off. At present the cryo seems to be in remission, so I'm hoping for a long lasting remission, even though I know it probably won't last.
I'm encountering a few people on the internet who have cryoglobulinemia but not very many, so it has been hard to find a support group for this condition. Cryo is rare enough, but even fewer people have essential cryoglobulinemia. I guess I'm one of the lucky ones. I have no viral infection, no limphoproliferative disorder, and I don't seem to have other autoimmune disorders exacerbating/causing the cryo. It's just me an cryoglobulinemia.
My rheumatologist has been wonderful and has done a great job of helping me to learn about my disorder as well as treating my condition. I've got nothing but praise for the medical establishment other than the fact that my general practitioner did not recognize my vasculitis when he first saw it, leading to delays in my getting proper care, but this condition is so rare that few doctors have seen it firsthand. I guess the lesson to learn there is to make sure that you get to a doctor who has experience with autoimmune disorders, or you could end up misdiagnosed and not properly treated.
So far the prednisone has done a good job of suppressing the disorder and my last blood test was negative for cryoglobulins and my SED and CRP levels were normal. Hopefully this will last a while.
In any case I just thought I'd join this forum in the hope of finding others who were dealing with cryoglobulinemia.
Thanks for reading
Glen -
- CommentAuthorjaycd2
- CommentTimeAug 18th 2009
Hi Glen -
I have essential cryo [primary] and vasculitis and was diagnosed in 2002. My early treatment was with prednisone which I call my 'magic poison' since it stops the pain but is detrimental to your bone health. In the first 2 years my rheumatologist experimented with several drugs and settled on a combination of Imuran and Placquenil. After 2 years we switched to Imuran alone which I have been on since 2004. My dosage has been increased twice since I had flare-ups that required an increase. I am in a cryo group that started with most of the participants being Hep C+cryo...but in the past year or two there are more primary essential cryo members. The group is at http://health.groups.yahoo.com/group/Cryoglobulinemia/. There is also a new group forming at: www.Careplace.com
I wish you the best in health management.
Joan -
- CommentAuthoralcyon73
- CommentTimeAug 20th 2009
Hi Joan!
We are in such a tiny, exclusive club. Not many people have essential cryo. Yes, I know about the group at careplace.com
Your posting gave me hope. I've been in remission since this thing began last December and I've been slowly tapering off of the steroids (I'm down to 7 mg a day) to see if the remission will hold. This morning I awoke and found myself stiff with arthralgia. I don't have a rash yet but it looks like my remission may be failing. I'm going to call my rheumy today and we will take it from there. We had discussed going to imuran or to an anti-malarial drug if remission fails, so I predict that there is a high probability that I'll be moving to an immunosuppressant of some kind.
Glen -
- CommentAuthorjaycd2
- CommentTimeAug 25th 2009
Hi Glen -
Glad to hear you are tapering off the steroids, but I'm sorry to hear you may be coming out of remission. I call prednisone my 'magic poison' since it absolutely quits the pain but does such damage to one's body. This thing is such a mystery! I have underlying vasculitis, but have not had the rashes either. Take care and I hope your doc finds the appropriate mix of meds for you. I wish there was a total homeopathic way to treat this...
Joan -
- CommentAuthoralcyon73
- CommentTimeAug 25th 2009
I ended up calling my rheumy who told me to double the dose of prednisone and call again in a week. I did that and I started feeling better right away. My symptoms were gone completely within two days.
So much for long term remission.
I had almost 9 months of trouble-free remission while on prednisone. A little flare up when tapering down is not a great surprise. I had sort of hoped that it might be a long lasting medication-free remission, but that was apparently not in the cards. So, plan "A" is blown out of the water now I guess it is down to a new long term strategy (plan B). I'll know more about the long term strategy when I meet up with my rheumatologist.
Glen -
- CommentAuthorjaycd2
- CommentTimeAug 26th 2009
Ah...the 'magic poison'...it works so good! When I was put on Iuran and Plaquinil, the prednisone was tapered off since they did not want to just take me off all at once. When I had flares during this time, my rheumy would increase the dosage. This was over a 9 month period. I hope your doc finds a good combination of drugs for you. I am on 150mg of Imuran - 3 pills a day. In addition, I had a case of breast cancer that was caught very early and did not mestacize to my lymph nodes ... so no chemo or radiation after my lumpectomy. [lucky me] So I have been taking Tamoxifen for 4 years now - along with my Imuran. Too many pills, but they all work - for now. I would love to have a med-free period of time, but I don't think it is in the cards for me either. Take care, my friend...and stay in touch after your visit with doc. -
- CommentAuthoralcyon73
- CommentTimeAug 28th 2009
Joan
You mentioned curiosity about natural treatments for cryoglobulinemia. I've done some research on that and I found just a few things. There was one study done with glowing reports on the low antigen content diet that suggested that the odds of maintaining remission in cryoglobulinemia improved. HOWEVER the study did not have a control group and failed to account for placebo, so it's really just someone making claims that they really can't substantiate. According to John's Hopkins vasculitis center , diet is not theraputic for autoimmune vasculitis, but they do recommend maintaining a heart healthy diet.
Also, there was a study of fish oil and cryoglobulinemia. Interestingly enough, they found that a few people with cryoglobulinemia taking fish oil supplements experienced slightly reduced cryoglobulin levels, but that there was no improvement in symptoms such as arthralgia, purpura, weakness, etc, etc. Other studies support that conclusion saying that cryoglobulin levels are not related to the severity of symptoms in cryoglobulinemia. However , one study of cryoglobulinemia in patients with hepatitis c suggested that extremely high cryoglobulin levels may be a marker for a less desirable outcome (whatever that is).
These are just a few factoids that I've come across in my research. No, I don't have citations for them, but I thought I'd share some hard-won info.
So maybe fish oil and a sensible diet is a good idea, but don't expect a lot. :)
As always , talk to your doctor about it.
Glen -
- CommentAuthoralcyon73
- CommentTimeSep 10th 2009
I hope nobody minds if I blog my experiences here.
My cryoglobulinemia has continued to flare. The arthralgia was severe enough today that I've started using a cane again. I visited my rheumy today and she started me on imuran with plans to eventually taper off of the steroids once we get the cryo back in remission.
The worst part has been the fatigue and weakness. It is crushing. It makes doing normal everyday things harder. I've been having more neuropathy. It looks like the cryo is currently affecting my muscles and the nerves in my legs. Even though there are no external signs of vasculitis it is clear that vasculitis is present.
The doctor gave me a script for neurontin and a wonderful nsaid called voltaren gell. I rub it on the affected joint and the pain goes away. It's great stuff in my opinion.
My left foot is not doing well. I've got a fair bit of swelling and edema and the veins in the sides of my foot are red (inflamed) and almost resemble livedo reticularis, but not quite.
My left wrist is sore and stiff. My knees are usually affected first and most, but for some reason my knees are not bothering me so much today. It's mostly my feet and ankles right now.
I don't have any external signs of vasculitis. (thank you lord). My rheumy says that sometimes rheumatoid arthritis accompanies other autoimmune disorders. It's hard to say if this is just cryoglobulinemia or if it is cryo plus RA. I don't think it matters a lot, since the treatment is essentially the same.
Glen -
- CommentAuthoralcyon73
- CommentTimeSep 13th 2009
on cryoglobulinemia and temperature changes....
I keep the temperature in my apartment at 74F and I get along just fine with it. Now that summer is over the weather is cooling down a bit. Lately the outside temperature has been in the mid to upper 60's. Its nice weather, the kind that makes you want to be outside.
On weekends I have the habit of walking to the town center and meeting with friends and just enjoying being outdoors and chatting with those whom I meet. Now that my cryo is out of remission I notice for the first time how easily temperature changes affect me.
After about an hour of exposure to mid 60's temperatures I begin to notice stiffness and soreness in my knees, feet, and ankles. I experience muscle weakness and become fatigued easily if I have to walk very far. (Mind you I'm wearing a flannel shirt and a denim jacket to keep warm.) At some point I decide to leave and return home. Even after returning to warmer temperatures my condition will continue to worsen and my ankles, knees and wrists become stiff and sore. This will last all day, and may even last into the next day.
I've learned several things that help. Voltaren gel seems to help a lot. Elevating my legs helps a lot, and if things are very bad a power nap helps me to recover my strength. A hot shower will help reduce stiffness. And a heat pad helps stiff and sore feet and ankles.
Right now it is evening and I'm just now recovering a bit from my outing this morning. I think I'm going to postpone further trips to the town center until my cryo is back in remission. I've just started taking imuran and I'm told that it will take several weeks for it to kick in (yes I'm still on prednisone). I'll be in full remission again soon, but for now, I need to be careful about temperature changes.
So, does anybody else with cryo care to share how temperature changes affects them? I've got a hunch that it varies a bit from one person with cryo to the next. There are so few of us that there are not many written accounts to read on the internet, so it might be nice to hear from you if you have cryoglobulinemia.
Glen -
- CommentAuthoralcyon73
- CommentTimeSep 20th 2009
I hate to just keep blogging mindlessly here, but I feel like I want to share what I'm going through. My cryoglobulinemia continues to flare. Some days are better than others. I'm walking with a cane now on most days. The weakness in my legs is terrific. It is the biggest problem that I seem to have. I have a hard time doing many things, but somehow I manage. Some days are "cane days" and others are not. The last few days have been kind of difficult. I just do what I have to do to get by.
I've had a little more swelling in my feet and ankles lately. The heating pad and elevating my legs seems to help keep that under control for the most part. My knees hurt at times and are generally stiff, but the NSAIDs helps that a lot. Up to now I've had no outward signs of vasculitis, but last night I noticed I've now got a couple of large faint red blotches on my left foot, and a few tiny red spots that look a little like petechiae. I'll be watching this closely.
I realize that this will soon be back in full remission, but at the present, just being able to walk and run seem like a distant memory, even though it has only been a few weeks since my cryo started to flare.
I'm really glad that this is not a full blown flareup. I'd be one sick and unhappy child. For now I'm arthritic as heck, hanging in there and coping as best I can while I wait for the imuran to kick in.
Glen -
- CommentAuthorLindaG
- CommentTimeSep 20th 2009
Glen, Blog away all you want. That's what this forum is all about. I can only speak for myself, but I certainly don't mind. Writing your way through your recent flare-up can be as helpful as the pills we need to swallow to get us through.
And, I notice that you are quick to help others find answers to their questions and you offer compassionate support to their pain. Give and take. Balance. You have a good handle on that.
Here's hoping you have a good day today and find some relief, even for a short time.
LindaG -
- CommentAuthoralcyon73
- CommentTimeSep 20th 2009
LindaG
Thank you for your kind words.They are greatly appreciated. In spite of it all I'm having a wonderful day.
I went down to the town center and had breakfast at the Cafe, and I then spent a little time outside enjoying the nice weather. I encounterd a number of people who know me. It was good to be out and about. Unfortunately I could not stay outside long because it is too cool for me. I then went to the store and got a few groceries.... mission accomplished. Today has been an exercise in determination. I'm very determined to do the things that I normally do, to live my life and to overcome this as best I can. So far, today has been a success, and I'm content with that. Now I'm going to spend the rest of the day just resting, and recovering from my busy morning.
I'm learning to live with the temperature demands of my condition. So far I'm doing okay. I'm hoping the cryo will be back in full remission before the weather turns really cold. Otherwise I'm going to have a very hard time of it. In any case, I'll just have to work with what I've got. I'm learning to adapt to being weak and needing to use a cane. Today is definitely a cane day.... I"m finding ways of working around my limitations..this battle is winable.
Lastly, your very nice response to my posting is uplifting. I really do appreciate it.
Glen -
- CommentAuthorLindaG
- CommentTimeSep 20th 2009
Glen,
I, too, am having a "good" day and trying to accomplish things from my "good day list." It's not all work--a lot of it is fun, like repotting some plants, digging up some herbs from the garden and getting them inside before the first frost, doing a little baking--as well as the not-so-fun stuff like cleaning the house!
My autoimmune condition is called Cogan's syndrome--I have a post on here so you can read about it if you'd like--I can't drive anymore because of the vertigo but some days are better than others with my balance, and, thank God, I still have my hearing and vision. I'm coming off of a high dose of prednisone right now--it made me absolutely manic and useless--I'm waiting to see if the Remicade and methotrexate they've given me will hold and replace the pred.
This forum has been sobering and humbling for me. I realize that even though my life has (and forever will be) changed because of this disease, I value what I'm still able to do. I am also grateful that my condition was diagnosed quickly and by someone who has seen this rare syndrome before. I am shocked when I read about how long some have had to wait for a diagnosis.
Anyway, I check this forum on a regular basis and I enjoy reading how you're doing. Your entries have been steady, intelligent, balanced, helpful, and wonderful to read. Hang in there. It seems as if you're doing all the right things both medically and mentally. Here's to a quick remission before the snow flies.
LindaG -
- CommentAuthoralcyon73
- CommentTimeSep 20th 2009 edited
I'm glad to hear that you are having a good day. I'm glad to hear that you are coping and are living your life. Quality of life is everything IMHO.
I hope your pred taper works out for you. I have that to face again once we get the cryo back into remission. Having done the research, I know that it might just come out of remission again when I try to taper off of the steroids. My doc wants me off of the steroids altogether, and I agree, so that challenge lays ahead.
Yes, I agree, there are some sobering accounts to read on this forum. Autoimmunity is a tough gig to play. I'm amazed at the courage and strength that people seem to find. We so desperately need a cure.
I check the forum a couple of times a day. Today I'm pretty much on the forum continuously because it is Sunday and I'm determined to do nothing whatsoever if possible.
I just checked my feet, I have red blotches on the side and top of my left foot and I have red blotches on the side and bottom of my right foot. It looks like purpura which tells me that I'm developing cutaneous vasculitis. The moment one of the blotches turns necrotic I'm calling my rheumy. It looks like the cryoglobulinemia is escalating. The vasculitis is the scary part of cryo.It can affect any organ, it can affect the skin, and when it does it can be very damaging. The last time around I ended up with an ulcer on my left foot, nearly lost two toes and I lost the tips of two fingers to gangrene. I hope this self-limits, but past experience says it may not. So I"m very concerned about it. In any case I simply have to wait to find out.
Glen -
- CommentAuthoralcyon73
- CommentTimeSep 22nd 2009 edited
I was going to wait a few days before blogging again but the situation has worsened so I think I'll vent my frustration here. I've developed a small rash of petechiae on my right foot. I still have the reddish blotches on both feet. A small sore between the toes on my right foot that I thought was due to athelete's foot has turned out to be a tiny ulcer.It looks like it might just heal up okay on it's own. It is smaller than a dime at the moment. I don't see any eschar in it, no redness. I don't see any necrotic lesions anywhere.
I'm in a bit of pain. Both of my knees, my feet and both wrists and ankles hurt. Today was a pretty good day... no pain and I felt good all day long. At around 6:00 PM things started to degrade rapidly. I don't know why. I've not exposed myself to cool temperatures. It simply got worse. The muscle weakness continues to be a big problem. Most of my joints are stiff. To top things off I've got a sore in my mouth...what's with that? I seem to be slowly crumbling at the edges.
Glen -
- CommentAuthorLindaG
- CommentTimeSep 22nd 2009
Glen,
Here's hoping the foot sores stay minimal and begin to improve. I know--it's good to be vigilant about recognizing changes so you can take care of them early, but it seems like such a balancing act to not to get obsessive about it! I'm so new to all of this--I'm weaning off the prednisone and so cognizant of every little change going on in my body. I'm trying to separate out what's really important for me to monitor.
"...slowly crumbling at the edges" That phrase is a powerful and apt descriptor of what you seem to be feeling. Hang in there. You said you've bounced back from these setbacks--I'm sure you can do it again.
LindaG -
- CommentAuthoralcyon73
- CommentTimeSep 22nd 2009
I'm glad your prednisone taper is going well for you. Hang in there! Hopefully it will work out well for you.
I can't believe how quickly the vasculitis set in. Skin ulcers are a serious development in cryoglobulinemic vasculitis. It is something that one needs to be very careful of. If it were allowed to progress I would be hospitalized in a few days as the vasculitis is systemic and won't stop with just affecting the skin. Not to mention the gangrene and ulcers! ugh!..... The speed with which things turned very bad was remarkable.
I called my rheumy and she increased my prednisone dose from 15 mg/day to 30 mg/day. The arthralgia stopped with the first dose. It is too soon to tell for sure but the vasculitis does not appear to be escalating further. Now I've got an ulcer to heal. Fortunately it is small so I probably won't need a foot surgeon to fix it like the last one, which took 6 skin grafts and 5 months to heal.
So, now I feel fine again. I can walk without pain now. Hopefully the flaring has stopped.
It is amazing how fast the prednisone works. It's such a great drug. It is too bad that it has such bad side effects.
Glen -
- CommentAuthoralcyon73
- CommentTimeSep 25th 2009 edited
The ulcer on my right foot was not looking very good. It was deep and it appeared to possibly be infected, so I went to the local wound clinic two days ago. They prescribed antibiotics and dressed the wound with something called polymem silver. It looks like a piece of foam rubber.... This morning I changed the dressing for the first time and the wound looked a lot better and appears to be trying to heal... so far so good. The podiatrist told me that it was good that I came to the wound clinic before the ulcer had gotten very big and that it may require little to no surgical intervention because of my preemptive move. Believe me, there is NO WAY that I wanted to end up with a large necrotic ulcer like I had the last time!
My cryoglobulinemia appears to be heading rapidly into remission. The red blotches on my feet are fading and the swelling in my feet is greatly reduced. I have almost no arthralgia and what little pain I have does not require pain killers now. Perhaps the imuran is taking effect, or maybe it is just the increased dose of prednisone that is helping. I'm still having a lot of muscle weakness and the muscles in my legs are sore. I suspect that it will take a while for my muscles to recover from the damage caused by the vasculitis. A certain amount of the pain is probably being caused by neuropathy. I'll know more about that as time progresses.
I seem to have survived my latest flareup. I'm tired and weak, but I feel good and I am recovering. Hopefully I'll have a lasting remission and the transition to imuran will continue with good results.
Glen -
- CommentAuthorLindaG
- CommentTimeSep 26th 2009
Glen,
Yeah! I'm glad to hear that you're responding well to the medication. Whether it's the prednisone doing the trick or the Imuran, healing is healing and does much, I'm sure, to help your mental state as well.
Hopefully, the weather where you are won't be too cold this weekend to exacerbate any other discomfort. I'm learning a lot about your condition (thank you) from your personal experience and the Web--I can't help but think your writing will help others with cryoglobulinemia, too.
My own disease (Cogan's syndrome) continues to respond well to medication. I am down to 5 mg of prednisone (from a high of 70 mg at the beginning of August) and the methotrexate and Remicade seem to be holding symptoms at bay as a replacement. I go for another Remicade infusion this Wednesday and should be done with prednisone by the first week of October. That will be a milestone and a test--two poisons replacing another--I'm hopeful it will be successful. Of course, the residual damage will always have to be dealt with but it's a small price to pay to get most of my "normal" life back for however long Fate will allow me to have it.
Stay "warm" and feeling good this weekend. It's pumpkin time here in New England and I hope to enjoy all that it has to offer today before the rains begin tomorrow. The color orange never looked so brilliant as it does this year (even in its slight blurriness!)--I came very close to only being able to "see" it in my mind.
Keep getting well, my fellow AI friend!
LindaG -
- CommentAuthoralcyon73
- CommentTimeSep 26th 2009 edited
LindaG
Thanks for responding to my post. It's good to hear that you are down to 5mg of prednisone. You are almost done with it! Let's hope the remicade infusion goes well for you. I'll say a prayer for you. Hopefully this is the beginning of a long remission that will let you live a normal life. I've read good things about remicade. Hopefully you are one of the many to get the good benefits that it offers.
I plan on staying warm. I'm mostly staying put, trying to rest up. I did make my usual walk down to the town center to have a cup of coffee and a breakfast sandwich this morning. It is 60F here, so I bundled up nice and warm and went for a walk. The muscle weakness made it hard and I think I overdid it a little, but I'm okay. I need to remember that I have to know when to rest and when to knock off and take a power nap to allow myself to recover.... one simply can't always push ahead against all odds.
Like it said it is 60F here , we typically don't get a frost until late October, or even into November. Our winters are typically mild. Nonetheless, the trees have started dropping their leaves, so fall is definitely here. I'm glad you were able to find remission before you lost your eyesight. Cogan's is such a scarey disease IMHO.
In any case things seem to be moving forward well enough here. I can't really complain about it. It's all about healing right now.
Glen -
- CommentAuthoralcyon73
- CommentTimeSep 30th 2009
I made my second visit to the wound clinic today. The doc says the ulcer on my right foot is not going to heal on it's own. Next week they are going to begin a series of skin grafts (dermagraft) in an attempt to get the wound to close and heal. It hurts a lot. I asked the doctor for something for pain and I was given a prescription for vicodin, which helps reduce the pain a lot.
The arthralgia is gone. I have no joint pain now. The muscle weakness is diminishing rapidly. For some reason the vasculitis flared up today and in a matter of a few hours I developed two small necrotic lesions on my left foot and two very tiny lesions on the middle finger of my left hand. The fun never stops with autoimmune vasculitis. Along with that I developed a large number of reddish blotches and a rash on my left foot... which are now rapidly fading. The cryoglobulinemia seems to be adopting an on/off character, apparently the disease course is being modified by the medications. Hopefully this will soon stop altogether.
Glen -
- CommentAuthorLindaG
- CommentTimeOct 1st 2009
glen,
ouch! sorry to hear that your ulcers need some extra help to heal. here's hoping the grafts are successful. keep fighting!
but on the flip side, it's good that the arthralgia is gone and you can get around much easier. are you still on the prednison? anyway, it should make your walks to town more enjoyable. i know how important they are to you.
i'm down to 2.5mg of pred and had another poison infusion (remicade) tx yesterday. my body seems to be tolerating the assaults okay--no adverse reactions--i'm thankful that i can still hear and see well. so, from a clinical perspective, i'm turning into a success story so far. not necessarily what i had hoped to achieve in life, but hey...i know, i should be grateful. and i am grateful, in that weird, chronic illness sort of way.
continue to get well, my friend. talk with you again on cyberspace soon.
LindaG -
- CommentAuthoralcyon73
- CommentTimeOct 1st 2009 edited
LindaG
I'm glad to hear that things are going well for you. Hang in there! You are almost done with the prednisone!
I'm still on prednisone, at 30 mg/day. I"m still on 50mg/day imuran. I just had my blood work done and my sed rate has improved, confirming that the inflammation is easing up a bit. So things are looking better!
On a sad note, my daughter has called and informed me that she has been tentatively diagnosed with an as yet unknown autoimmune disorder after ending up in the emergency room with severe raynauds and arthralgia. She is also complaining of sensitivity to cold. I'm hoping and praying that it is just raynaud's and not cryoglobulinemia, but it sounds to me like cryo. She is going to get a referral to a rheumatologist and follow up. Hopefully she will get a proper diagnosis soon.
Glen -
- CommentAuthorLindaG
- CommentTimeOct 4th 2009
Glen,
Sorry to read about your daughter's recent diagnosis. Here's hoping that the rheumy she goes to gives her good news.
I also hope this week finds you well and recovering. I'll find out on Thursday when I go to the doctor whether the Remicade and methotrexate have been successful in replacing the prednisone. I'm not sure...I can still hear okay but there's a lot of noise going on in there and my eyesight SEEMS a bit more blurry but I'm probably being hypervigilant about every little change. It will be fine. I'm thinking positive thoughts for both of us!
Linda -
- CommentAuthoralcyon73
- CommentTimeOct 4th 2009 edited
I'm having a bumpy weekend. More lesions popped up on my leg and hand, making me think that the cryo is coming out of remission again..... I called my rheumy. I think I'm starting to get a little jumpy. The vasculitis really scares me a bit.
The news about my daughter was a proverbial bolt from the blue. I'll have more on that as the situation develops.
Hang in there Linda! I think it might be working for you. Let's hope for the best.
Glen -
- CommentAuthoralcyon73
- CommentTimeOct 5th 2009 edited
LindaG
You are in my prayers. Hopefully it will be good news when you go in. Good or bad , let us know.
My rheumatologist has doubled my dose of prednisone to 60 mg/day, along with doubling the imuran to 100 mg/day. She attributes my chronic flaring to the changing weather. I agree.
If I may resort to dark humor: It is fall, the season where all the cryoglobulinemics come out, turn blue and consume lots of prednisone.... :/
I'm now on a high dose taper. 60 mg/day this week, 50mg/day next week, and so on until I get down to 30 mg/day. At that time I'll meet with my rheumy again and we will make long term plans again.
Glen -
- CommentAuthorLindaG
- CommentTimeOct 5th 2009
Glen,
Here I am, taking my last dose of prednisone tomorrow, and you're gearing up to 60 mg. Such is the new world of autoimmuniacs I've entered--people come and people go but they never leave, right? Autumn is my favorite season but I can understand why it might not be yours. Different perspectives. I hope for you a mild season of change.
Don't worry about any dark humor--I can take it. My e-mail is on my profile if you really need to vent outside of this forum.
Stay warm. No extremes. Take your medicine. Thanks for your prayers.
But with all that, I had a "wake-up" moment at work today. In an ironic twist of fate, a position I would have been perfect for six months ago opened up. I was all set to submit my resume, but then I realized I can't apply for it. It requires some travel/attendance at outside meetings--I can no longer drive because of my illness and I find it hard to concentrate some times; my mind just blanks out while trying to say the simplest thought. I don't know if I'm really in remission or not--I can barely get through the day at my old job and I'm not back to full-time yet. Anyway, It's difficult to acknowledge that some things have probably passed me by--forever. I feel better than I did six weeks ago, but it's never going to be "normal" again. That's hard to accept. I've been fortunate to have a friend who has been so steady and good about helping me deal with expectations versus acceptance of what is. That "what is," right now, today, should be enjoyed because it might turn out to be the best it's going to be. And you don't want to miss it.
Anyway, as horrible as the prednisone is, I wish you healing! Let's hope it helps with your skin grafting so you're not laid up for too long. Please keep in touch.
Is there a Starbucks in your town? The Pumpkin Spice Latte is to die for. I don't drink coffee but I do treat myself to a few Pumpkin Spice Lattes when it's offered in the fall. It's the small things that make a difference. Cheers!
Linda -
- CommentAuthoralcyon73
- CommentTimeOct 5th 2009
I so agree. I've come to realize that some things are never going to be the same again, ever... Even at that, I've still got a lot. I'm so determined to hang on to what I can and I'm terrified that my disorder could make a victim of me. So far, I'm hanging in there and I'm SO grateful for my victories. I guess I can consider making snow angels in the snow this winter to be ruled out....
Why yes, there is a Starbucks just down the road from here. I might just give the Pumpkin spice latte a try this weekend. Right now I'm in hiding, hoping that the remission fairy will be kind enough to visit right away.
Glen -
- CommentAuthorLindaG
- CommentTimeOct 9th 2009
Hey, Glen,
Just checking in to see how you're doing. Hope you are moving forward and recovering from your latest flare up.
I went to the ophth specialist yesterday and I appear to be in a remission right now. I've been off the prednisone completely since Tuesday and I'm holding steady. The Remicade and methotrexate seem to be keeping symptoms at bay. The doc was thrilled with my progress--and so am I. I still have the disequilibrium and probably will have it forever but I'm learning to adjust to it. Right now, it's a small price to pay considering I could have been deaf and blind at this point.
I hope you have a great weekend. I had my Pumpkin Spice latte in celebration of my great doc visit. Mmmm, very good (lots of calories, but we'll worry about the prednisone weight gain tomorrow). Life's little pleasures. Take care.
LindaG -
- CommentAuthoralcyon73
- CommentTimeOct 9th 2009
LindaG
Yay! I'm glad you have a remission going! I'm doing well lately. I went to the wound clinic yesterday and they decided that I did not need a skin graft and the ulcer on my foot appears to be healing... so the skin graft is deferred for now. As far as symptoms go, the cryoglobulinemia seems to be in remission for the moment. I've got multiple small gangrenous lesions on my fingers, foot and leg that are healing. The purpuric rash and blotches on my feet are slowly fading. It will take weeks for those to heal , and months for the ulcer to heal, but things are definitely improving for now. I'm walking a lot better now. The strength in my legs is returning and I'm thinking that soon I will be walking without a cane. As I write this I'm celebrating with a nice hot cup of cinnamon stick tea.
Glen -
- CommentAuthorLindaG
- CommentTimeOct 9th 2009
Glen,
Yeah to you, too! I've been worried about you so I'm glad to hear things are progressing. Off to work today. I'll be exhausted when I return but at least I can still do it. Looking forward to the long weekend.
My favorite tea is Earl Grey and anything with peppermint (helps the tummy when it's upset). Talk with you soon.
LindaG -
- CommentAuthorLindaG
- CommentTimeOct 10th 2009
Glen,
Check out the Cogan's thread here. Yeah!!!! There are people like "me" who have recently responded (doing a happy dance). Hope you are well this beautiful autumn Saturday. It's unseasonably warm but nice here in Connecticut. A little cloudy and breezy but the air definitely smells like fall. I can't get enough of it. Makes a person want to buy apples and pumpkins and bake a pie loaded with cinnamon or ginger or something. Enjoy the day, wherever you are.
LindaG -
- CommentAuthoralcyon73
- CommentTimeOct 10th 2009 edited
Hi Linda!
I'm in Maryland. The temperature here is about 65 degrees. I just got back from my morning walk to the town center for a cup of coffee. It is definitely fall here and the trees are showing lots of color. Yes, hot apple cider sounds yummy right now.
I am doing great at the moment. I'm walking without a cane and I'm not having a lot of pain, so I am content. My cryo seems to be in remission, so cold is less of a problem at the moment.
I have lots of little wounds and lesions to heal, but that will come soon enough. All I have to do is to stay in remission for now and the "battle damage" from my flareups will heal.
I did read your cogans thread and I think It is good that you have drummed up a nice support group for cogans here on the forums! Keep it up, you are doing a good thing IMHO.
I wish I could get a few more people with cryo to join in, but there are so few of us to begin with that one can hardly expect to encounter anyone with essential cryoglobulinemia. I think I'll just keep blogging my experience here and hope that it is of use to others with cryo.
Glen -
- CommentAuthorLindaG
- CommentTimeOct 10th 2009 edited
Glen,
Maryland! You're so close. My son lives in Baltimore (8+ years) and I LOVE to visit him there. It is such a great city--my son has taken advantage of all it offers and navigates it as if he's lived there all his life. My husband and I visited him over 4th of July (I hadn't been diagnosed with Cogan's yet, but had really bad symptoms). I was so emotional, because I thought the Inner Harbor fireworks might be one of the last things I'd see.
Oh, I'm so glad we're both doing well this weekend. It's nice to be feeling a high like this without outside help from any drugs. I'm definitely taking this day and wringing it dry of all its goodness.
Don't be discouraged. Others with cryo will find you. Look how long it took me? I've seen that you've posted on other threads, too. That will help.
LindaG -
- CommentAuthorLindaG
- CommentTimeOct 14th 2009
Hey, Glen,
Just checking in on you and hoping that you continue to improve, especially with the recent cold weather that's moved in. I assume Maryland is experiencing the same temperature drop.
How is your daughter making out with her medical struggles? I hope she's been able to find someone to treat her and figure out what's going on.
I'm doing well. A week without prednisone and the disease is being held at bay with the Remicade and methotrexate. Cross your fingers (if you can). I know crossing your toes would be too painful! But I also know you're thinking good thoughts. Thanks.
LindaG -
- CommentAuthoralcyon73
- CommentTimeOct 14th 2009 edited
Hi Linda!!
I'm doing very well. Yes it is very chilly here, in the mid to upper 40's today, so I'm avoiding cold exposure as much as possible. I seem to be in remission so my cold tolerance is actually pretty good, but I'm not taking any chances.
I went to the wound clinic today, and the ulcer on my toe is nearly healed. At the present rate the wound ought to be closed in a few days and I will be healed. The ulcer on my thigh is a bit bigger but is healing nicely and is not causing much pain and it ought to be healed in a week or two. The ulcer in my mouth is nearly healed. I'm glad of that because it hurt quite a bit for a while. The various lesions that I have on fingers and toes will take a while to heal. They are sore , but I'm not in a great deal of pain. If the last time is any indication it will take a month or two to heal the lesions.
It's all about healing right now, and things are looking surprisingly good. The lesions are small, so things are going to heal quickly if I can avoid infection.
I've already started tapering my prednisone dose. Things are looking good so far. I'm down to 50 mg/day.
My daughter called last night and we had a long talk about her condition and about autoimmunity and cryoglobulinemia. She is pretty sick, but she is a tough kid and is hanging in there. Her doctor has tentatively diagnosed her with arthralgia and raynaud's and has her on naproxen sodium for now so she has at least some relief from the arthralgia. They are still trying to get the blood work sorted out, and I expect that it will be at least a few weeks before they have enough info to diagnose her with anything concrete, but the prime suspects at present are lupus and cryoglobulinemia. Based on what she is saying to me the only indication of vasculitis that she is currently showing is raynaud's on her hands , legs and feet and red blotchyness on her feet. I'm hoping that her condition will self limit and that she does not develop cutaneous vasculitis. It's abundantly clear that she has an autoimmune disorder now, but the exact flavor remains unknown.
I'm glad to hear that your medication is working for you. That sounds a lot like a big victory for you! Having remission going for you will make life so much better.
Yes, I'm thinking positive and so far thigns seem to be moving in the right direction, so I do really have a lot to be thankful for at the moment.
"but for the grace of god go I"
Glen -
- CommentAuthorLindaG
- CommentTimeOct 21st 2009
Hey Glen,
How are you coming along? Has the week been good to you?
I'm still holding steady--working 32 hours a week now and should be back to full-time (God-willing) before the end of the year. I've been asymptomatic so far. My Cogan's thread on AARDA, and a members-only Cogan's site, has introduced me to some new friends for which I'm very grateful. It's a relief to talk with others and hear their stories in order to gauge my own situation. And, although I'm a "newbie" within this new world of autoimmune disorders, I've even been able to help a few people!
Anyway, I just wanted to check in and see how you were doing. Despite the change in weather, I hope you're enjoying the change of seasons. My Baltimore son is having a "fall festival" this weekend, complete with a pumpkin-carving contest, but he admits, it's still not like autumn in New England.
Take care.--LindaG -
- CommentAuthoralcyon73
- CommentTimeOct 21st 2009
Hi Linda!
I'm glad to hear that things are going so well for you. I'm getting along pretty good. I went to the wound clinic today and they pronounced the ulcer on my right foot to be healed. The ulcer on my left thigh has a way to go, but is coming along nicely. The ulcer in my mouth is healed, and I still have the assorted necrotic lesions to heal.... they will take months to heal.
My remission continues to hold and I am slowly tapering down the prednisone. I'm down to 40 mg/day and I'm still on imuran at 100 mg/day. I feel good so far....no bad side effects from the imuran. The prednisone is causing lots of side effects... moon-face, shaking hands, sweating, mood changes, etc.... but they will ease up as I taper down the dose over the next few weeks.
My daughter has tested negative for cryoglobulins and positive for rheumatoid factor. She still has a lot of blood work out at the labs and no diagnosis yet, other than the doc acknowledging that she has an autoimmune disorder.
Now that the flareup is over I feel so grateful for just being able to walk normally and live my life.
Autoimmunity is SO not fun. Thanks to the medications, I'm able to live my life. I hate to keep repeating myself, but I'm seriously grateful for my remission. I get so sick and tired of being sick and tired...
I'm surviving the cool weather. Having cryoglobulinemia makes cold weather seem like a cruel joke, but the medication allows me to survive it. I still have to be careful to limit my exposure to cold. I dress in layers and I try to keep warm at all times.
That's about all that I can think of to say for now. I'm doing okay and I don't have any major complaints.
Glen -
- CommentAuthoralcyon73
- CommentTimeNov 14th 2009 edited
More Cryo drama....
I've been doing really well lately. My lesions are healing and all of the ulcers I had were long ago healed, so I've been a happy camper. Here is the show stopper...two days ago my right foot suddenly went very numb and tingly. It looks like I might have some kind of polyneuropathy. I've had mild neuropathy associated with my cryoglobulinemia all along, but this is an order of magnitude greater. I have made an appointment with a neurologist, but I don't have much hope that this is curable, or even treatable.
From what I've read, this sometimes happens in cases of small vessel vasculitis (like cryoglobulinemia), so it does not come as a great surprise to me. While I knew that I could eventually have significant nerve damage, I wasn't really expecting this to come to me so soon.... so it is off to the neuro I go on the thin hope that it is just something treatable like a pinched nerve and not a nerve hopelessly damaged by autoimmune vasculitis.
Glen -
- CommentAuthorfluffylittleclouds
- CommentTimeNov 29th 2009
Hi, I think I may have this type of cryoglobulinemia too. As far as I know I have no associated viruses or conditions. My liver tests are always normal. I'm kind of getting tossed around between doctors because I live in a small town that doesn't have someone who normally deals with this. I go back to my neurologist next week for more tests. Has anyone had to take methalotrexate (sp?). I'm not sure what I will do if they want me to try prednisone since I've destroyed my GI tract long ago. Can anyone tell me what other kinds of things cause cryoglobulinemeia other than hepatitis?
Thanks,
B -
- CommentAuthoralcyon73
- CommentTimeNov 29th 2009 edited
Hi B!
I'm sooooo glad to hear from someone else who has essential cryoglobulinemia! There are not many of us. I've not tried methotrexate, I'm currently on prednisone and imuran with plans to taper off of prednisone in the near future.
Prednisone is both a curse and a wonder drug. It is the drug of choice for bringing cryo into remission, but beware of the side effects... Methotrexate or imuran are often used to maintain remission after the prednisone has done it's job. The idea is to start methotrexate or imuran and taper off of the prednisone gradually.
There are a number of things that can cause cryoglobulinemia besides hepatitis C.
Hepatitis B can also cause it, so can the chickngunya virus (a rare tropical disease).
A lymphoproliferative disorder (Lymphatic cancer, like non hodgkins lymphoma) can cause type 1 or type 2 cryoglobulinemia. Also, the epstein barr virus can cause it, as well as bacterial endocarditis. In these cases treatment involves treating the underlying cause.
Also, cryo can be caused by other autoimmune disorders, particularly connective tissue diseases like Lupus or rheumatoid arthritis.
In short , cryoglobulinemia is the immune system's response to chronic inflammation.
Lastly , there are a very few (like you and me) who don't seem to have any cause for it, as though the immune system simply misfired and decided to attack itself.
It is very hard to find a doctor who knows how to treat cryoglobulinemia. Most doctors have never encountered it. I was fortunate enough to find a rheumatologist with experience with this disease and I've had good results thus far. If you find yourself going from doctor to doctor , that is not a good thing, in that case you might need to find a good rheumatologist and stick with it so that you can get your cryo into remission and keep it there so that it can't hurt you.
In any case I'm really glad to hear from you. Please keep posting here, let us know how you are doing.
Glen -
- CommentAuthorfluffylittleclouds
- CommentTimeNov 29th 2009
Glen, thank you for your response. I'm still at the beginning of my diagnosis so this is all very new to me. I have had chronic inflammation in my knees for 23 years that has largely been untreated since they don't know what causes it or how to treat it. My GI tract is ruined from NSAIDS so those are out. Currently the Topical Flector patches seem to be giving me some relief without disturbing my stomach.
I haven't tried the methotrexate yet. Since I'm at the beginning of this it's just very unpleasant and I do my best to stay warm. It's a little embarrassing but I sometimes wear gloves at work to type because my fingers get so darn cold. My feet are worse and I've started to notice that they have a permanent reddish orange discoloration to them. Do you have that? Is that because the blood vessels aren't getting blood flowing properly? I'm really scared the tissue is going to start dying.
My neurologist doesn't feel comfortable treating this since it's not her area so she wants to refer me to a hematologist. Is that the right kind of specialist for this?
Thank you for talking to me. You're the first person I've met who has this. What other symptoms can I expect to appear? Will it eventually not be enough to just make sure to stay very warm especially in my extremities? Are there other tests to diagnose this besides the qualitative and quantitative lab tests? If it's an autoimmune disease does that mean I have another condition that we just haven't discovered yet?
Beth -
- CommentAuthoralcyon73
- CommentTimeNov 29th 2009 edited
Dear Beth
I'll try to answer your questions as best I can.
Methotrexate will work, but it takes a month or so for it to take effect
.Usually they establish remission with prednisone first, then add methotrexate and taper off of the prednisone once the methotrexate has had a chance to take effect,.
I take my prednisone with an antacid (omeprazole) or with food so I don't run into GI problems that way.
Yes, I dress in layers at work and I wear a jacket indoors and sometimes wear gloves too. I'm not shy about it as I'd rather not run into a problem with my cryo.
The discoloration in your feet is called hyperpigmentation. It is caused by damage from the vasculitis that cryo causes. I've been diagnosed with cryo for nearly a year now and I'm already starting to get it in my left foot. The only time you have to worry about tissue dying is when the vasculitis is actively flaring up. In some cases (like mine) It can cause ulcers and even gangrene to develop, so keeping the cryoglobulinemia in remission is a must for me.
Your neurologist is correct. A hematologist can handle cryoglobulinemia. So can a rheumatologist.
The basic symptoms of cryoglobulinemia are called Meltzer's triad. The triad is arthralgia (arthritis like symptoms), purpura (reddish, purplish bleeding under the skin), and muscle weakness (particularly in the legs).
A lot of people with cryo also have peripheral neuropathy. Some have GI problems, intestinal pain,etc.
When my cryo is flaring, exposure to cold causes my legs to become weak and my joints to be stiff. The muscle weakness is often the worst of it. I might also experience raynaud's phenomena (my fingers turn blue). Eventually I become quite arthritic, and ultimately the vasculitis starts. When the vasculitis starts, I might develop a sight rash on my legs and feet and I develop purple/red blotches on my feet and lower legs. I sometimes develop skin ulcers on my feet and I develop gangrenous lesions on my toes, fingers and various other places. I sometimes develop mouth ulcers as well. In short, I can develop an ulcer or gangrenous lesions anywhere, but it is mostly on my feet, and I tend to develop gangrene in my fingertips easily too.
Some people with cryo don't develop the ulcers and gangrene, so don't let me scare you, but I figure that you want to know the truth of it.
When it comes to staying warm, keep your core body temperature up. Dress in layers, wear gloves and a hat. Don't get cold soaked when you go outside. Keep trips out in cold weather to a minimum. I don't know if the cold sensitivity of cryo gets worse in time. I sort of doubt that it does.
On lab tests. The definitive lab test for cryoglobulinemia is for cryoglobulins. High levels of cryoglobulins are diagnostic for cryo and you can be diagnosed based on that single test alone. People with cryo also often have low C3 and C4 levels, and the doctors sometimes like to test for those as well.
Yes, cryoglobulinemia is an autoimmune disorder, yes it can be caused by some underlying condition (see my previous post on this) but you probably don't have that problem.
Glen -
- CommentAuthorfluffylittleclouds
- CommentTimeNov 29th 2009
Okay, now I'm kind of scared because the discoloration in my feet has been there for a while. I do go through periods where my pain flares. I just assumed that was the neuropathy acting up. Last week though my neurologist told me that neuropathy shouldn't have variations in the sensation level so I guess it was the cryoglobulinemia that I was feeling. Other than the rise in pain, how would I know if the vasculitis is acting up?
Is the pain just due to the arterioles being clogged with the cryoglobulins? I wonder if there are triggers to this autoimmune disease that I'm setting off without knowing it?
You asked about temperature in one of your earlier posts and I have become really sensative to the cold. I usually wear 3 or 4 undershirts to whatever I am wearing that day. Heating pads help and so does a hot bath. My friend has an infrared sauna that he lets me use. I've also found just putting my feet into a small bucket of hot water with some epson salts makes them feel better.
You mentioned somewhere that inflammation can cause this and I've had chronic inflammation in my knees for decades. I've seen so many doctors for that and had various surgeries but no one has ever been able to tell me what the cause of that was. Then about 5-6 years ago I started to develop what we think is a small fiber neuropathy. It was just in my legs but now it's moved into almost the entire rest of my body. It's really quite frightening to have this happening. Mostly because I don't seem to have any control over it.
I haven't noticed too much in the way of muscle weakness yet and I've never had a skin ulcer. What can I do to prevent that? I keep my skin clean and dry but I don't know what to do for the insides.
You mentioned low C3 and C4 levels. I'm sorry I don't know what that is. I haven't had a quantitative test yet, just the qualitative one. I will probably have that drawn next week.
Dare I ask what happens in the advanced stages?
Thank you for all of your information Glen. It's much more than the doctor has told me and I really haven't found much online except that it's usually related to another condition and treated by treating that. I hope your pain is down some.
Beth -
- CommentAuthoralcyon73
- CommentTimeNov 29th 2009 edited
Beth;
Thanks for sharing how you cope with the cryo. I may try the epsom salts trick the next time I have a flareup.
I guess I was kind of vague. The discoloration on the feet is just a discoloration. It is caused by the vasculitis. It really does not do anything.
There is very little information available on essential cryoglobulinemia. The bulk of the research on cryo is focused on cryoglobulinemia associated with hepatitis C. There is very little research being done on essential cryoglobulinemia.
Essential cryoglobulinemia is generally treated with corticosteroids like prednisone, and/or immunosuppressants like imuran, methotrexate and cyclophosphamide. Treatment is very much like that given for many other autoimmune disorders.
I've attempted to answer more of your questions below...
On inflammation... Cryoglobulinemia causes inflammation. It causes inflammation in the small blood vessels in the body. It can affect any organ, any system, etc,etc. The arthralgia that the cryo causes is an inflammation in the joints and muscles around the joints. The symptoms of the arthralgia are a lot like rheumatoid arthritis.... pain and swelling in the joints. particularly in the wrists and knees.... but any joint can be affected. The vasculitis caused by cryoglobulinemia is often manifested by purpura, caused by inflammation of the small blood vessels , leading to bleeding under the skin. Not only does cryo cause inflammation of blood vessels, the cryoglobulins can precipitate and cause outright plugging and thrombosis in small blood vessels.
The neuropathy sort of varies. My neuropathy is worse when the cryo is flaring up. I'm just now starting to develop significant nerve damage in my feet. I appear to have mononeuritis in my right foot as well as a very mild case of polyneuropathy in both feet and hands.
I find it particularly depressing because it is already impairing my ability to walk. I've had this disorder for a year and have only had two major flareups. I sort of fear what it may have in store for me long term.
The muscle weakness, for me, seems to come with the arthralgia. I've found nothing that helps it. It eventually improves in time after the cryo has been forced back into remission with medication. Also, further muscle weakness can be caused by neuropathy.
Cryoglobulinemia is a small vessel vasculitis. When I have a flareup, I first have arthralgia for a while (a week or two), then the cutaneous vasculitis starts. The first symptoms I get of the cutaneous vasculitis is purpura (red/purple skin blotches) on my feet and lower legs. Things rapidly progress from there and I start getting lesions, ulcers, etc, etc. So when I see the purpura, I know that trouble is coming in a day or two. Some people develop a rash on their feet and hands. I barely develop a small rash, but only after the vasculitis is flaring up for a while.
Ignoring the pain of arthralgia, the pain that cryo causes is twofold. It is from a loss of circulation due to the inflammation of the vasculitis and plugging of small blood vessels, and some of the pain is likely to be caused by neuropathy (based on what I've read). I've not had any pain from neuropathy, just tingling and various paresthesias like odd sensations, burning or itching sensations in my feet, etc. With that said, there are three sources of pain in cryoglobulinemia; arthralgia, vasculitis, and neuropathy.
As far as triggering a flareup goes, I don't know of any triggers other than cold.
When it comes to causing the disease, It is an unknown.
On second thought I DO know of some things that might precipitate a flareup. Some claim that stress or illness can trigger a flareup. Some people have had flareups following a surgery, for example.
C3 and C4 are immune system components called "complement", they are consumed by cryoglobulins when the disease is active.
If you have never had a skin ulcer, then you probably won't ever have one. Some people with cryo don't develop skin ulcers. Cryo is not a progressive disease and each flareup is usually much like the one before it. It does not really change much over time. There is no advanced stage(s) to cryoglobulinemia. The thing you have to watch out for is accumulated damage from the neuropathy, and if you are one of the few people who have kidney or liver problems associated with cryo you have to watch out for that as well.
Glen -
- CommentAuthoralcyon73
- CommentTimeDec 3rd 2009
It's time to blog some more...
I've been to my rheumatologist and to the neurologist. Amazingly it turns out that they know each other and are good friends. That works out well for me as the communications between them is good.
My condition is not the best. I'm getting progressively weaker due to the prednisone. I'm having significant neurological problems. My right foot is numb and during the exam the neurologist discovered that I have mild foot drop in the left foot due to very weak dorsal muscles in my left foot. Basically, I have mononeuritis multiplex. Needless to say, I don't walk very well.
I'm getting a duplex doppler study done on my legs, I'm getting an electromyogram done, and an MRI of my lower spine. Essentially, this is either due to vasculitis or a bad back. The doctor suspects circulatory problems in the left foot. I'll know more at the end of the month when I have the results of all the tests. I'm fortunate in that I don't have any pain.
It's really important to determine if this is due to vasculitis or not as it drastically affects the treatment regime for my cryoglobulinemia. If this is due to vasculitis, I'l probably have my meds switched from imuran to something more aggresive like methotrexate or cyclophosphmamide before I taper off of the prednisone. Originally we had planned to start tapering off of prednisone by now, but with neurological problems looming, my rheumy is concerned that tapering off of the prednisone right now could trigger a damaging flareup....so everything now depends on the test results.
Glen -
- CommentAuthorLindaG
- CommentTimeDec 3rd 2009
Hey Glen,
I haven't been here in a while but I wanted to check and see how you were doing. I'm sorry to read your last post and to hear things haven't been going well. But it sounds like you have a good team of doctors looking out for you which is a rare thing--I pray they can get your symptoms under control so you can get better.
The jingle of bells can be faintly heard in the distance...I wish you the health you need to enjoy the upcoming holiday season.
LindaG -
- CommentAuthoralcyon73
- CommentTimeDec 3rd 2009 edited
LindaG
It's always good to hear from you. I've been wondering what you have been up to. I hope you are feeling well. My condition has become more complicated than grim. It's going to take a while to sort it all out I think. I feel good and I am planning on enjoying the Christmas holiday. I ordered a bunch of cold weather clothes and boots to keep me warm this winter. Let's just say I won't be cold at all this winter... My daughter goes back to her rheumy next week. Hopefully she will get at least a tentative diagnosis from him.
Glen -
- CommentAuthorfluffylittleclouds
- CommentTimeDec 3rd 2009
Hi Glen, I've had the EMG done. It's not too bad. I'm sorry to hear that you are having more weakness. Is that due to the neuropathy or the cryo? I haven't noticed weakness yet, just really intense burning cold. I really have to watch myself with hot objects because I can't really feel they are hot and the only place I feel comfortable is somewhere quite hot like a tub of hot water.
Today I had an MRI of my cervical spine to see if something around C5-6 is causing some of my symptoms.
The rapid progression of this is oddly enough pushing me to make the most of the time that I have. I have a trip planned in January. I just hope I can manage to stay warm enough. I think I'm going to be wearing so many layers that if I fall over I will just roll down the mountain. If anyone has any secrets to staying warm while camping please let me know.
Beth -
- CommentAuthoralcyon73
- CommentTimeDec 4th 2009 edited
Hi Beth!
I had an emg before. it was done on my arm and shoulder a long time ago. This one will be on my legs.
My MRI will be of the lumbar spine to see if my symptoms are caused by a back problem.
Currently most of my weakness is due to being on prednisone for so long. I'm having lots of side effects from the prednisone. I'll be glad when I can finally stop taking it. I've got some weakness in my left foot from neuropathy. I have mononeuritis multiplex in my left foot causing a bit of foot drop. It is likely caused by the cryo. My right foot is numb, but not weak at all.
Having cryo and going to the mountains in the winter sounds like a dangerous combination to me. Stay warm, dress in layers, thermal underwear, insulated socks, warm boots, insulated shirt and pants, gloves, hat and a nice warm jacket. You might consider getting a snowmobile suit. Don't get chilled. Don't take chances. Don't play in the snow. Have fun.
My trouble with cold is that it does not feel very cold to me, but my cryo thinks otherwise and I end up arthritic even though it does not feel very cold to me. My reaction to cold is not immediate. It takes a bit of exposure to it and then I'm weak, sore and stiff for hours, maybe even all day. If my cryo has been flaring up for a while, I can end up with raynaud's phenomena and cutaneous vasculitis can be a big problem, so I have to be diligent and minimize my cold exposure when my disorder is flaring up. Right now I seem to be in remission so my cold tolerance is pretty good but I still need to be careful.
Glen -
- CommentAuthorfluffylittleclouds
- CommentTimeDec 4th 2009
Good news, my MRI came back completely normal. So whatever is causing my reflexes to be reversed is not compression or a defect in my Cervical spine. I hope your EMG went smoothly.
I'm surprised that you aren't sensative to the cold. I have become exquisitely sensitive to the cold now. I barely feel hot objects or water. My worst pain now is a constant freezing burn that never really goes away. It does help me to sit in an infrared sauna that a friend has. It's literally the only place I ever truely feel warm in my hands and feet.
I've ordered long underware from Patagonia and will have layer upon layer of stuff on. I even have a friend who is giving me some sort of packet that can be used as a heater in gloves and socks. I'm just praying I don't have a flare while I am out there. Oh well, life is meant to be lived and that's what I'm determined to do.
Take care,
Beth -
- CommentAuthorLindaG
- CommentTimeDec 4th 2009
Glen,
Thanks for asking--I'm doing well (knock wood). I'm still in a remission. The hearing and eyesight are good and stable. The Remicade and methotrexate combo is working so we're just going to keep with it. The disequilibrium is still there but when I'm in my comfort zones (home, work, etc.), I'm able to manage it better. I'm driving but only to work and back and never at night.
I really do hope you beat this latest bout of discomfort. Keep up the fight!
LindaG -
- CommentAuthoralcyon73
- CommentTimeDec 5th 2009 edited
Hey Beth and Linda!
Wow this thread got busy!
Linda, I'm glad to hear that you are doing well. Let's hope the good health continues for you. I'm doing well enough at the moment. I've got lots of tests and doctors appointments going on right now. LOL! It keeps me busy.
Beth, I'm plenty sensitive to cold, it just takes some exposure over time, and then when it does have an effect it lasts a long time. I'm glad to hear you have your winter gear sorted out. Be sure to wear a hat and gloves too. Haha. my rheumatologist is always reminding me to be sure to wear a hat and gloves. She chided me last week for wearing sneakers in this cold weather. My feet turned a little blue so she told me to get warmer shoes. I ended up ordering a pair of insulated shoes and a pair of nice warm boots from Sorel. Lee Altenberg has links to cold weather gear for people with cryo on his personal web page at: dynamics.org/cryo I just got a new parka from Mountian Hard Wear, and some wind stopper gloves. I won't be cold this winter.
My EMG, and MRI are on Tuesday and I don't go back to the neuro until the 30th, so I'll have more news and all the test results then. Beth I'm glad to hear that your MRI was normal, but doesn't that leave a question as to why you have symptoms? Could it be due to cryo? Has your doctor offered an explanation yet ?
Glen -
- CommentAuthoralcyon73
- CommentTimeDec 19th 2009 edited
Fun in the winter snow!
We are having our first snow of the winter now. The weather service says that we can expect up to 22 inches of the stuff by the time evening arrives. Usually we only get a few inches of snow here (Washington, DC), and any snow at all parylizes the whole region. Needless to say, everything here is shut down and is likely to remain so for the next few days.
I'm fortunate in that my cryoglobulinemia is more or less in remission, so I can tolerate cold to some extent. No matter, I am am staying indoors as much as possible until things thaw out. If I believe the weather predictions it will be next week before this stuff has melted. Yuck!
I would be in a big fix if my cryo were not in remission. I know that some people with cryo somehow manage to survive winter weather. When I'm not in remission temps on the order of 65F trigger a flareup in me, so I just can't imagine what a mess I'd be if I were not in remission right now. I'm counting my blessings, dressing warmly and staying indoors!
So is there anybody out there with cryoglobulinemia who is not in remission and is surviving this winter weather ? What tactics are you using to get by ?
Glen -
- CommentAuthorLindaG
- CommentTimeDec 23rd 2009
Hey Glen,
If you celebrate Christmas, I hope you have a happy one. Best (and healthy) wishes for a good 2010.
LindaG -
- CommentAuthoralcyon73
- CommentTimeDec 24th 2009
Hi Linda!!
I sure do celebrate Christmas.
I'd like to wish you and your loved ones the best for the holidays and the coming year.
Glen -
- CommentAuthorcoldnose
- CommentTimeDec 26th 2009
I have read with awe and respect the messages here. I was diagnosed with essential type II cryo three years ago. (I had one persistently elevated liver enzyme and an elevated Sed rate, no symptoms.) Since November I have had the following symptoms: overall weakness, peripheral neuropathy, poor peripheral circulation. I am alternately chilled and sweating (Is there whole body Reynauds?) My nose will not warm up. I use chemical hand warmers, put them in a sock and hold it to my nose.
Is this just Reynaud's and the real difficult symptoms are coming down the path? I better buck up. This is new to me and frightening.
Everyone is correct about the lack of available data on the web. I am grateful for everyone's honesty and openness.
Best wishes to all of you. Coldnose -
- CommentAuthoralcyon73
- CommentTimeDec 26th 2009 edited
Hello Coldnose
I'm always glad to hear from someone else who has cryo. It is sort of amazing as to how varied the experiences of other people are.
The vasculitis that cryoglobulinemia causes usually affects the extremities (hands and feet) , but can also affect areas like the nose, ears, etc, etc. Some people with cryo experience raynaud's , but others might not. It varies a lot. Usually raynauds affects the hands and fingers, and often the feet and toes, but again, ears and nose can be affected too. Raynaud's has a visual character, causing pallor, followed by blueness and when circulation returns it can cause redness and you might experience some pain and tingling in the affected area.
If you are experiencing weakness and neuropathy, I'd strongly recommend that you get to a rheumatologist for treatment quickly as the neuropathy can suddenly leave you with a crippled foot that can make it painful and difficult to walk. In some cases of cryo the only presenting symptom is neuropathy, so it ia a pretty significant symptom to have and should be taken seriously.
I've been battling neuropathy that has been getting progressively worse. I've recently developed a blood clot in my leg that I attribute to inactivity due to the debilitating effects of cryo, and that has worsened the situation here significantly.
Since you have type 2 cryo you have probably experienced what is called Meltzer's triad, which is a suite of three basic symptoms, arthralgia (arthritis like pain), muscle weakness, and purpura (a mottling or a rash in the skin, usually in the feet and legs).
The best advice that I can give you is that if you are experiencing vasculitis causing ulcers, gangrene or neuropathy is to get your cryo treated and keep it in remission as much as possible so that it can't cause permanent injury. Other than that, cryo is not really a progressive thing, each flareup is usually pretty much the same as the one before it.
Glen -
- CommentAuthoralcyon73
- CommentTimeJan 10th 2010 edited
It's been a while since I had anything to say here. The results of all my tests last month are back and the outcome was quite different than what I was expecting.
It turns out that the bulk of the problems with numbness and tingling in my feet are due to mild spinal stenosis, and are not caused by vasculitis. It is good news on one hand, and bad news on the other as the stenosis is only going to get worse with age..... but that is another problem altogether.... The good news is that things won't be getting worse right away.
I'm still being treated for the blood clot in my left leg. There seems to be some visible improvement in circulation in that leg now, so I guess the treatment is working.
I'm going to see my rheumatologist at the end of the month. Hopefully we can now resume tapering off of the prednisone as originally planned. I'm doing okay with the cryoglobulinemia. I'm symptom-free and my cold tolerance is good, so I guess my remission is holding up. I'm going to get my blood work done next week and that will help indicate if there is an active inflammatory process or not.
Glen -
- CommentAuthorLindaG
- CommentTimeJan 16th 2010
Glen,
It sounds like you're making steady progress and handling the winter cold pretty well. Good for you!
My liver became a bit "congested" and stressed with the methotrexate. My numbers kept rising with each 4-week blood test,and I started experiencing afternoon edema in my lower legs. I lost my ankles every day at 2:00 pm and didn't find them again until the morning.
Anyway, the docs took me off the methotrexate until my next blood test, and my PCP also took me off my cholesterol drug, too. It worked. I just have to hope that my body doesn't start rejecting the Remicade. What a balancing act this is...
My birthday was on the 11th. I love my birthday...glad I was around this year to celebrate!
I hope your remission continues, too. Stay well.--Linda -
- CommentAuthoralcyon73
- CommentTimeJan 16th 2010 edited
Hi Linda!
I'm sorry to hear that your liver is objecting to methotrexate. I'm sure the docs will get the situation resolved for you. Hopefully the remicade will continue to do a good job of keeping you in remission.
Happy birthday to you! Mine was back in November. At 56 I barely notice it when a birthday rolls around.
I'm doing okay here. My remission is holding up and I've been starting to feel a lot better in recent weeks. I'm getting my usual blood work done next week and I'll visit my rheumy at the end of the month. I'm hoping the blood work will be fine and that my rheumy will tell me to start tapering off of the prednisone. I'm still on Imuran at 150 mg a day and prednisone at 30 mg a day and I feel good.
My daughter has not been doing well. The rheumatologist was no help to her, could not find anything wrong and sent her back to her GP. She has visible symptoms of raynaud's and the doc wrote her off. I'm a bit shocked. She says she is going back to her GP and then to the University hospital clinic later on.
Glen -
- CommentAuthorLindaG
- CommentTimeJan 19th 2010
I'm glad you're doing well, Glen but I'm sorry to hear that your daughter is going through her own version of hell with the medical profession. I hope she is diagnosed soon so she can start recovery. I think the scariest part of having an autoimmune disease--or any illness--is the not knowing what you're dealing with. I'm thinking good thoughts for her. -
- CommentAuthoralcyon73
- CommentTimeJan 30th 2010 edited
I went to my rheumatologist yesterday. She discussed my neurological issues and the problem with the blood clot in my leg. It seems that the mri does NOT show any spinal stenosis, but at the same time the EMG did not show any nerve damage...no neuropathy. So the troubles that I'm having with my right foot are yet to be explained fully other than to say that it could be a very mild case of spinal stenosis, and at the same time cryoglobulinemia can and does cause neuropathic problems in a lot of patients.... so that diagnosis is still up in the air.
She went on tho say that the blood clot in my leg could be associated with the cryo, and indeed it does seem likely. Right now I'm on coumadin for the blood clot and things seem to be healing nicely. I'm on lyrica for the neurpathic pain in my foot and I'm getting along a lot better there.
We have resumed tapering off of the prednisone. I'll be tapering down at the rate of 5 mg/week until I reach a dose of 15 mg/day and then we will hold there for a few weeks. If no problems develop we will slowly taper off from there. I expect to be completely off of the prednisone by June. Right now I'm at 25 mg/day prednisone and 150 mg/day imuran.
Glen -
- CommentAuthornop23th
- CommentTimeMar 3rd 2010
I hope it not to late to found your, I am very glad to met some one else (it very vary rare disease in my country) in my they found 2nd to other dz in 40-50 yr(only few case) not me so i have many quesions in my head?????/ NO one to Talk to so U can guess how happy i am ,sorry for my poor english
nop -
- CommentAuthoralcyon73
- CommentTimeMar 3rd 2010 edited
nop
I am so very glad to hear from you. Cryoglobulinemia is very rare. Only 1 in 100,000 have it, so there are not very many of us.
I was diagnosed with essential cryoglobulinemia a year ago after I ended up in the hospital with vasculitis. Since then I've been on prednisone and other than one flareup last fall, I have mostly been in remission. I'm presently taking prednisone at 15 mg/day and Imuran at 150 mg/day. I am currently symptom free and I feel good.
Please do ask questions and I will try to answer them.
Glen -
- CommentAuthorLindaG
- CommentTimeMar 4th 2010
Our small but mighty group of women with Cogan's Syndrome chat each day on our page on Facebook, so I haven't been to this site in quite a while. But, I wanted to check up on you Glen, because you were so helpful to me when I was first diagnosed last year and feeling so helpless and alone. You kept me company here when I needed it the most.
So, I'm really glad to read you're symptom free and feeling good. Your presence on this forum has helped a lot of people--I just wanted to say "thanks."
LindaG -
- CommentAuthoralcyon73
- CommentTimeMar 4th 2010
LindaG
It's good to hear from you! I'm glad that I've been helpful to you. Likewise you helped me through that awful flareup last fall! I'm so glad the forum is here. It has been the place I go to in order to vent my frustration and fears, my disease , and it is a place for me to go to find the support of others like myself. I think the forum is a really nice contribution on the part of AARDA.
Glen -
- CommentAuthornop23th
- CommentTimeMar 5th 2010
Hi Glen,Linda nice to meet you 2,
I take my med for 1+ yr and still uncontrol jt pain and raynaund that distrunbmy job and my social .In my cont T 25-32C people always says " it so hot"but i still chill .THEN When u met someone to understand u it like very warm place to going for
when you re control dose cryo trun to normal? -
- CommentAuthoralcyon73
- CommentTimeMar 5th 2010 edited
nop23th
cold temperatures can cause my cryo to flare. When it does flare I have to take big dose of prednisone (60 mg/day) to get it under control again. Right now I am in remission so the medication is keeping my cryo under control.
It gets very cold here (below 0C) so I have to be careful of cold weather. Cold makes my joints hurt, particularly my hands feet and knees. Getting warm again usually makes the pain go away after a day or so. It can take a long time for me to feel better after exposure to cold. The medicine keeps the symptoms under control so right now I feel good and cold does not bother me very much.
Glen -
- CommentAuthorpapaeck
- CommentTimeMar 18th 2010
my husband had a heart bypass a little more that 2 yrs ago, his blood pressure went up and was on 3 medications, it brought the bp down but i noticed it was summer and we were in a supermarket and his nose was blue. then thru the winter his face, ears , nose were blue and hands killed him. our primary physican told him he had raynouds disease. the following summer he had sores on his legs, the dr sent him to a surgeon and they did heal but they flare up occassionaly. now his white bl ct was high and primary phy sent him to a hematoligest. he had bl tests and has rhumatoid factor and has to have a cat scan in a week ---he has cryogobulinemia, i thought he might have cold agg disease. i found this web site and he has what a lot of systems you all have. he was told we need to go south for the winter, we live in ne---we can do that for a few months ---but he has no energy and feels better in the warm weather. -
- CommentAuthoralcyon73
- CommentTimeMar 18th 2010
papaeck
Thanks for posting. It is good to hear from others who are dealing with cryoglobulinemia.
Florida, Arizona and Hawaii are the best places to go if you have cryo. The down side is that while a warmer climate makes things better , you can still have a flareup.
But in many cases, appropriate treatment can keep the cryo in remission so cold weather will be less of an issue once your husband gets treatment.
The exact treatment regime depends on the underlying cause of the cryoglobulinemia. Very often simply treating the underlying cause can force the cryo into remission. For those who have no underlying cause (essential cryoglobulinemia) corticosteroids and immunosuppressant drugs are standard fare. Mild cases are sometimes treated with anti-inflammatory medications, and sometimes might not be treated at all.
Myself, I have essential cryoglobulinemia and I am on prednisone (15mg/day) and Imuran (150 mg/day). I am currently in full remission to the point that I am able to tolerate cold weather rather well if I have to.
Go south if you can afford to. It will make life easier for your hubby, but getting the cryo treated might force it into full remission and you might not need to move.
Glen -
- CommentAuthorpapaeck
- CommentTimeMar 19th 2010
i love hearing that about remission, the dr. Hemotoligest never mentioned that , maybe our regular practioner will help in that area---we never can go south for the whole winter, we would have to sell our house. all our family is here and we are retired and babysit 2 or 3 days a week---do you go to a rhemotolgist?? -
- CommentAuthoralcyon73
- CommentTimeMar 19th 2010 edited
papaeck
Yes, I have a rheumatologist who treats my cryoglobulinemia. Right now we are working on tapering off of the prednisone and using imuran to maintain remission. I see my rheumy every three months and I have regular blood work done to make sure the cryo is not doing bad things to me. Typically, I have a complete blood count, full metabolic panel, erthrocyte sedimentation rate, C reactive protein and a urinalysis done, regularly. So far things are going well.
Your husband's hematologist might be wanting to spend some time trying to find an underlying cause for his cryo. This is likely a good idea as most cases of cryo are caused by hepatitis C and in that case long term treatment with predbnisone or immunosuppressants can exacerbate the hep C, thus a different treatment is needed for cases caused by Hepatitis C than for essential cryo.
Glen -
- CommentAuthorpapaeck
- CommentTimeMar 20th 2010
the tests my husband had were for hepatitis and rhematoid factor, he tested positive for the rhemotiod factor, but my husband doesnt seem to have a big problem with the aches etc. just once in a while. he is very tired though. im kind of nervous about the ct scan the dr is using this as a base so he can watch him. i think it is strange that he got this right after his bypass surgery unless he had it before and didnt know , he wasnt one for going to the doctors for regular checkups--its good to be able to talk to others about this, no one ever heard about this before and this is boston. going on our trip today , im going to see how he is in a week of warm weather--check with you when we are back -
- CommentAuthornop23th
- CommentTimeMar 20th 2010
HI ,
lovely for hearing form all of u , there re large gr than i thing that so good. Can u tell me about Hawaii ? warm all year? averge temp. Now i busy for finding imuran and suffer for try trapper off pred ,only good thing is it summer now .
How you check your type cryoglobulin with lab was perform --i could only did pos or neg but i want to know prognosis -
- CommentAuthoralcyon73
- CommentTimeMar 20th 2010
nop
Hawaii is a tropical island. If I recall correctly the average temperature is 72F.
Many labs won't give cryoglobulin levels, they just specify positive or negative. Find a lab that does do this and specify "cryoglobulin levels" on the prescription for the blood test.
One thing is, that cryoglobulin level is not related to disease severity at all, so it's use as a prognostic indicator is not good. However, getting levels assayed can reveal which type cryoglobuins are present and can be useful in a diagnostic sense. For example, people with cryo caused by rheumatoid arthritis typically have type III cryoglobulins, and people with type I cryoglobulins usually have a lymphoma of some kind. So cryoglobulin levels can be useful in a diagnostic sense, but have little use in terms of prognosis.
Glen -
- CommentAuthornop23th
- CommentTimeMar 21st 2010
Thanks , Hawaii is still so cool for me. IN my town 21-37 C only 25C can make my symptoms poor my fingers become blue i can think about 0 c ( very very cool), Now it 35-36 C but my doc try to trapped pred 1/2 tab only 2-3 days my hip was pain. I read some paper that type may asso with malignancy and prognosis.Then I curious about how i know they mono or poly clonal Ig Or How we know what typw we are if all of them neg .
My doc never talk to me about this ,they said onlly when my symptoms were controled cryo may neg ( think so),but event at the time ii think i can control my lab still poss and they can only control few wk when i go back for work they come back.I hope u understand how i worry about them -
- CommentAuthoralcyon73
- CommentTimeMar 21st 2010
Yes, when cryo is in remission, the test for cryoglobulins will often be negative. That could make getting cryoglobulin levels difficult.
The prognosis for cryoglobulinemia is usually good. If the kidneys are involved the prognosis is often poor.
You can sort of tell if you have type I cryoglobulinemia. You might experience symptoms of hyperviscosity. Not only that if you had a malignancy your blood count would probably be way off. Also, type I cryoglobulins don't have rheumatoid factor, you won't be positive for RF.
In the case of mixed crytoglobulinemia (types II and III) malignancy can develop years later , but this is unusual, and again, the blood work will likely detect it. In the case of mixed cryoglobulinemia, RF is always present. So if you have tested positive for RF, you have type II or type III cryoglobulins. Since the RF is in one of the cryoglobulins, you might test negative for RF when the cryo is in remission.
Glen -
- CommentAuthortempleton
- CommentTimeMar 24th 2010
Hi all,
I hope you don't mind if I crash your cryo forum. I've continually tested neg for cryogloblin, although I'm tempted to ask to test again next doc visit. How ever for the past 15 years I've had pretty regular Vasculitis, whic is induced when my skin is exposed to cold air (oddly enough, not water) The worst offender for me is the friendly office air conditioner. my 1st diag many years ago was Cold urticaria, a simple antihistimine of zyrtec or allegra or xyzal has handeled the hives for the past 15 years, but the rashes are extremely disfiguring. My legs, arms, hands are just ugly, my arms and hands clear up but the discoloring on my legs will never go away. Fortunately I've never had the sores or open wounds. My symptoms and conditions all sound so similar to yours. I thought I'd go ahead and post.
I also suffer the joint soreness when exposed to the cold, my rhumatoid factor is up in the 400 range.
I've tried prednisone in the past but honestly I'd rather deal with the vasculitis than the side effects of the prednisone.
One question I have for any one who cares to answer is what type of DR are you currently using? I've been to rhumy's, who want to call it reynoids (sp?) Derms who actually diagnosed the vasculitis but say there is nothign they can do for me and its not life threatening. Now I just see my Gen pract, She seems to care the most, but I'm only managing it with xyzal, and occasional Cellebrex and an anti depressant welbutrin really helped with the exhaustion and tiredness.
I currently live in Alabama will be moving this summer, not sure where yet. But I'm hoping when I move I can find a new DR who has more experience with my condition. Ideas?
Lori -
- CommentAuthoralcyon73
- CommentTimeMar 24th 2010 edited
templeton
Welcome! Crash right in here, It's good to have the company.
Cryoglobulin testing is problematic. Most doctors and hospitals send their cryoglobulin testing out to places like Labcorp or Quest. You don't want this as you are likely to get a false negative result. Few places perform the cryoglobulin testing correctly and even fewer handle the blood correctly prior to testing. You need to find some clinic or hospital that is known to do their own lab work in-house and has a history of performing the cryoglobulin test correctly. A good rheumatologist with experience with cryoglobulinemia will know where you can go to get the test done properly.
Some people with cryo also have cold urticaria. Also, a high RF suggests rheumatoid arthritis which can also be accompanied by cryoglobulinemia. Lastly, people with cryo often have a high RF as one of the cryoglobulins carry rheumatoid factor in type II and type III cryoglobulinemia.
You really need to get to a good rheumatologist or possibly a hematologist if you think you have cryo. You also need to have blood work done regularly to check up on your kidneys and liver and a lot of other things as cryo sometimes has a sinister way of quietly working in the background to cause serious damage to kidneys, muscles and nerves to name just a few. This is a nasty disorder.
Prednisone is the gold standard for treating cryo. But there are alternatives. antimalarial drugs and the immunosuppressants like imuran or methotrexate are often used to keep cryoglobulinemia in remission. You might look into that.
Raynaud's can cause cold sensitivity and a lot of pain and discomfort, but, to my knowledge, does not cause vasculitis. A high RF kind of stands out and suggests that something else is also going on along with the raynaud's.
I went to my rheumatologist today. I've been feeling great with no symptoms to report, but my blood work was not so good. It seems that some of my muscle enzymes were elevated indicating that I might have a problem with muscle inflammation. We are going to attempt to sort out if it is being caused by medication or the cryo. This will take a few weeks. This is important because the inflammation could lead to muscle damage or even damage to the heart. Secondly it is important to know if my cryo is really in full remission or not. Events of the last several months kind of make me think that it might not be in full remission.
Glen -
- CommentAuthortempleton
- CommentTimeMar 25th 2010
alcyon73 thanks for the welcome and the information.
I know i don't have raynauds, I told the rumy that. The only thing I have in common with raynauds is a sensitivity to the cold. Unfortuantely we only have one Rhum paractice in town, part of the reason I'm hoping when I move I can find a practice more educated in my condition.
Interestingly enough, I actually work for Labcorp, and I can tell you that I would not trust any non inhouse lab to do the chryo test properly. Unfortunately I can have any lab test done for free, being an employee and do take advantage of that bennefit, but a cryo is not worth it. I did have approx 5 cryo tests run at one point when I was going to the emmory clinic in Atlanta,they all turned out neg...I'm pretty sure they were an inhouse, but can't be sure the test was right.
Early on after developing this condition, I saw pictures of cryo symptions, ans said thats it it!! that's me! But have never been able to test positive. I'll be sure to ask my next Dr to run it again. I've settled on working with my GP, because she seems the most concerned and actually cares. Practically every other dr I've worked with hemo, rhum, derm, Vascular, all say essentially " well you know what you have, you know there is no cure,its not life threatening it its current state, all we can do is monitor blood". Well heck my GP can do that, and at least she tries things.
I sure hope your in remission, 15 years and the only time I was ever in remission was when I spent 2 weeks in the Virgin islands staying at a house that had No AC, the resturants didn't either, I also spent days in the sun and swimming in the sea water, my skin almost looked normal!!! Air conditioning messes with me like no other irritant come close. In the south I can't escape it. The other morning it was snowing out, that didn't bother me, till I got into the office and the AC is blasting, snow falling outside, my co worker who gets hot flashes claimed..oh its nice in here.
Wish I could get disability for this or Medical reason to work from home.....but my condition is viewed as "weird".
now i'm just ranting and venting :) But it so nice to find a goup who understands!
I will definately share of of the info you provided with my GP, thank you. -
- CommentAuthoralcyon73
- CommentTimeMar 28th 2010 edited
templeton
Yes indeed, it is so good to be able to converse with others who know what dealing with autoimmunity is like! Sometimes I get so tired of the battle, the disorder, the endless medication, the perpetual and frequent trips to the doctors. Being able to share with others really does take the bite out of living with cryo.
Yes, I agree, cryo is a really weird disorder. It's a shame they deny disability claims simply because they can. It is not right.
While I'm thinking of it, have you and your doctor ruled out cryofibrogenemia ? It can cause symptoms similar to cryoglobulinemia but, of course, you test negative for cryoglobulins.
I'm pretty lucky so far. The only time I have had to miss work was during my first flareup. During my last flareup I made it to work every day, even though it was hard. Fortunately for me my job is mostly a desk job, so all I had to do was claw my way to the office and do my job. My employer has been wonderful and supportive. They know I have cryo and they made accommodations for me and even supplied me with a nice electric heater for my office so I can keep it nice and toasty in my workspace. It has made a difference for me.
I've had people at work come to me with lots of questions about autoimmunity... invariably they have a loved one or a friend with an autoimmune disorder and simply want to know more. I try to be as open and informative as I can. I firmly believe that we need to have an increased awareness of autoimmunity so I share what I know freely.
I hope you can eventually get a diagnosis and treatment for your condition. I know that sometimes it takes a while to sort it all out, but keep after it. Getting a proper diagnosis can make such a big difference in terms of treatment and quality of life.
Glen -
- CommentAuthorLindaG
- CommentTimeApr 3rd 2010
Hey, Glenn,
Happy Spring! It is nice and toasty here in Connecticut this weekend. That's a good thing after the monsoons earlier this week.
I'm glad to read you're doing well. I have a question--the methotrexate didn't work out well for me so I am starting Imuran 50 mg. x 1 day to start on Monday for one week, than up to 100 mg. x 1 day after that. What's been your experience on it? Are you tolerating it well or have you had any issues? I'm feeling ambivalent about taking it because I feel wonderful and the once-a-month Remicade treatments are keeping my autoimmune disease in check. Of course, I realize the need for Imuran to make sure the Remicade keeps working but I'm sure you can understand my feeling that, if it ain't broke...
Anyway, none of the ladies in my Cogan's group have been on Imuran, so I thought I'd check here.
Have a good holiday weekend. Don't eat too much chocolate!
Linda -
- CommentAuthoralcyon73
- CommentTimeApr 3rd 2010 edited
Hi Linda!
I'm enjoying the spring.weather. I hope you are too.
I'm sorry to hear the methotrexate did not work out for you. I've been getting along with Imuran really well. I have no side effects from it that I can tell of. From what I've read it is a good drug for remission maintenance. That is about all I can say about it. I'm symptom free and I feel good. It takes it a month or two to kick in. Right now I'm on 50 mg three times a day.
Glen -
- CommentAuthorpapaeck
- CommentTimeApr 3rd 2010
just came back from the dominion republic temp was 80 deg. my husband felt like a million bucks--when we returned it was raining and cold, felt lousy again. now the weather here has changed and its warms he has so much energy---bad thing after ct scan they found a cyst on tip of pancreas---now we have to go for another ct scan. we were told not to worry , this is just a follow up , thats easy to say-- but im glad we are going back to hemotoligist friday and he will tell us exactly what he has and what he can do about it. -
- CommentAuthoralcyon73
- CommentTimeApr 3rd 2010
papaeck
Thanks for keeping us posted and for sharing. I'm glad your hubby enjoyed the trip. Nice weather can make a difference with cryo. Let us know how it goes with the hematologist on Friday.
Glen -
- CommentAuthornop23th
- CommentTimeApr 7th 2010
HI,LINDA&all,
Now ,I've very hot summer but it sound good for me.I started imuran for 9mo after fail traper off pred and anti malarial drug ,at low dose i have no SE but last 2 mo when i step up 2.5mkd i lose my peroid (they said it can b )---2wk ago ,I was trouble with nausea and vomiting everynight .I am not sure that maybe frome drug or my dz active.And now i want to stop all med because when i take more,i feel more nausea -
- CommentAuthoralcyon73
- CommentTimeApr 7th 2010 edited
nop23th
I'm sorry to hear that you have nausea. Imuran can cause nausea. If you increase the dose too soon you can have a lot of side effects. It might get better in time.
Usually you want to start at 50 mg per day and after a week or two increase the dose to 100 mg. you should talk to your doctor about it. Maybe you can reduce the dose to 50 mg until the side effects go away then try increasing the dose back to 100 mg?
Also, it can take a month or two for imuran to take effect, so going off of the prednisone and antimalarial drugs too soon could trigger a flareup. Be careful.
You should talk to your doctor about it.
Glen -
- CommentAuthornop23th
- CommentTimeApr 14th 2010
Hi,Glen
Sorry to b late.i just better for n/v after session off few but that make my jt pain but now i still keeping back to my regimen (i step up very slowly for 25mg/ mo )But then last time i had problems i had the same dose for a mo (100mg) and my Doc plan step up because my ranaud so poor and joint pain somettime still occur.For me I hope it not to bad ,next mo i'll geting start my training course. Last process is physical ex &lab ..........Oh !God safe me i need this training cousre ,last 6mo, i lost my job anb my insurance bx i 'm sick but i can work may b better one'..............oohhhhhhhhhhh. sorry have u ever hear association between cryo and migrine pls hlp -
- CommentAuthoralcyon73
- CommentTimeApr 14th 2010
Hello nop23th
I'm glad to hear from you. I'm sorry to hear that you are still sick. I hope your doctor can find medications that work for you. It can take a while to get it all sorted out, so hang in there!
I'm sorry to hear that you lost your job and insurance. That is an awful thing to have happen. I don't know what I'd do if that happened to me.
I don't know of an association between cryoglobulinemia and migranes, but I've read reports of some people with cryoglobulinemia complaining of headaches.
This is often associated with central nervous system vasculitis, so be sure your doctor knows about these symptoms as it could be important.
Glen -
- CommentAuthorLindaG
- CommentTimeApr 17th 2010
Hi Glenn,
Well, I don't think the Imuran is going to work for me. I never made it past the 50 mg. mark these last two weeks. In the last several days, it seems like all the pores on my face have completely dried out--I have flaking, dry skin that no amount of moisturizer can tame. Also, my eyelids are puffy and slightly red and I've had the worse stomach ache... What a sight I am! Thank God for the weekend so I can hide.
Anyway, I decided that my body is SCREAMING at me that suppressing my immune system is not what it wants to do. First, it didn't like the MTX, and now this. It's been handling the monthly Remicade without a problem but not these immuno-suppressants. I stopped the Imuran today and will deal with my rheumy on Monday. I will take my chances with the Remicade by itself for as long as it will work. The docs aren't going to like this, I know.
I hope you're doing okay, buddy. Thanks for listening...--Linda
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- CommentAuthoralcyon73
- CommentTimeApr 18th 2010 edited
Hi Linda!
I'm doing pretty good. I'm mostly symptom free and I'm not having any side effects from imuran at all. I'm still on prednisone but I'm down to 12.5 mg/day.
I'm sorry to hear that you hare having such nasty side effects from imuran. You could try the antimalarial drugs, chloroquine and hydrochloroquine. They work well for some people. Also, mycophenolate mofetil (cellcept) is another med that you might talk to your doctor about.
I've been struggling with treatment for a DVT in my left leg. The doctors seem to be having trouble getting my INR levels up to a theraputic level. I've been taking coumadin and lovenox injections twice a day for months. I'm so tired of the injections. But I don't want to end up losing my leg to a blood clot, so I keep taking the meds. I hope the docs can get this sorted out soon.
I've had a problem with muscle enzymes being elevated and my rheumy is running a bunch of tests to determine if it is due to cryogolbulinemia or not, so once again my remission might not be as complete as it seems to be on the surface. It is going to take a few weeks to sort this out.
I feel good and the cryo is not troubling me, but my blood work says that I'm a mess. Hopefully this will improve soon.
Glen -
- CommentAuthorLindaG
- CommentTimeApr 21st 2010
Hi Glen,
Thanks for responding and for your support. Despite some pesky troubles, your mood sounds good and it looks like you're able to enjoy the start of spring and the eventual (warm!) good weather. Good for you!
The eye swelling, itching, and redness has diminished quite a bit although my eyelids are still a little uncomfortable and flaking skin like crazy! What a weird reaction I had to the Imuran. Anyway, I finally spoke with my rheumy yesterday, and he basically said, "I got nothing else to try" with regard to an I/S and so, we're going it alone with the Remicade and hope it holds. On one hand, I'm relieved not to be using an additional I/S, but on the other hand, I know I'm at a greater risk that the Remicade will begin to fail. Such is the life of an AI patient. Always waiting for the other shoe to drop...
But today is today and it looks like a good one. I'm having lunch with one of my college professors who has decided to retire this year (he's in his mid-70s and sharp as a tack). It will be a bittersweet meeting as I've counted him as one of my supporters through all this and will miss his availability when I've needed it. But, I'm oh, so happy for him as he moves on to fulfill his retirement goals of travel, reading what he wants, and writing.
Losses, lots and lots of losses this past year...I know there's a master plan here somewhere. I just wish I could figure out what it is.
Happy Wednesday! I hope you continue to stay well.--Linda -
- CommentAuthornop23th
- CommentTimeMay 8th 2010
Hi ,Glen
I need some help , have u ever use LAC diet and dose it work ? Last month that i told u i 've had nv it just only slight improve my doc only wanted me to take imuran 2 tab on morn instead devide them ,i try LAC but i have i iron defiency and i still not seen it effect. -
- CommentAuthoralcyon73
- CommentTimeMay 8th 2010
Hi nop23th
I don't know of anyone with essential cryoglobulinemia who has benefited from the LAC diet. There has been one study done that claimed that patients maintained remission better on LAC, but it questionable. There are only a few rheumatologists who recommend it. As far as I have been able to see the LAC diet is not an effective treatment for essential cryoglobulinemia. If LAC works for you keep doing it, if not find something else. The increased dose of imuran is likely to take a while to be effective but if it turns out that the imuran won't work you may have to try something stronger like methotrexate or mycophenolate mofetil.
Glen -
- CommentAuthorkris4597
- CommentTimeMay 8th 2010
I was told i've cryoglobulinemia.It started a yr ago with blood in urine and decreased kidney function.The rheumatologist referred me to a urologist,had scans done and dye tests,then i was sent to a kidney dr. Who found out my kidney function has gone downhill since 06.Went thru nuclear scans,xrays,cat scans and then the final test was a biopsy on the kidney.I was told this disease is prominent in mediterranean people-which i'm not} or people with hepc.I've been recently tested for the hepc.Don't know the outcome of that yet.I had blood transfusion 36 yrs ago and i'm being told that might be the reason for all of this.The kidney dr. Wants to start me on chemo drug and prednisone.The chemo drug i've to be on a year and the pred-3 mos.I don't know what to expect from this.He says the chemo drug will be a low dose.I've had raynauds dis. Since i was a young child.It was hereditary.If i'm positive for hep c,then i will have to go interferon,don'tknow what to expect from that either.I'm 58 yrs old.Been having problems all my life.Ive b12 inj.Too.Anyhelp appreciated!!!!!! -
- CommentAuthoralcyon73
- CommentTimeMay 9th 2010 edited
Kris4597
Thank you for sharing your story. I'm 56 years old. I started having symptoms of cryoglobulinemia in November of 2008 and by December of that year I was in the hospital with vasculitis, internal bleeding, gangrene and skin ulcers. A blood test showed that I was positive for cryoglobulins. The doctors started me on high dose prednisone and my cryo went into remission. In the following year I tapered off of the prednisone which triggered a big flareup and I was placed on a combination of prednisone and imuran, which I am still on.
I'm negative for Hep C, Hep B, Hep A and I don't seem to have a lymphoma or an underlying infection. I have essemtial cryoglobulinemia. My cryo is currently in remission.
Cryoglobulinemia is very rare, only one person in 100,000 has it. It is most common in the Mediterranean countries. It is more common in females than males (3:1) and males who have cryo may suffer from more severe symptoms. It is usually caused by a chronic infection such as Hep C or by a cancer such as lymphoma, but a few people who have it don't appear to have an underlying disease of any kind. In the Mediterranean area about 90% of the cases of cryo are caused by Hep C, but it is a little lower in the US.
In cases caused by Hep C, treating the Hep C with interferon often causes the cryo to go into remission, which may or may not last when the interferon is stopped. Your doctors may elect to treat the cryo with prednisone and an immunosuppressant of some kind, such as imuran. methotrexate or cytoxan, to name just a few. Cytoxan is the heavy hitter, most effective in forcing remission , but it has nasty long term side effects. A lot of the doctors refer to treatment as chemotherapy since many of the drugs used to treat cryoglobulinemia are also chemotherapy agents, but are usually given at lower doses.
A few people don't respond well to the usual medications for cryo and in those cases a doctor may elect to try rituximab, a biological agent that is designed to reduce the numbers of certain immune system cells. It has been known to cause a long lasting remission in some patients. In severe, unremittant cases the doctors may prescribe plasmapheresis, which can sometimes force a long term remission that can last for months , even years. That pretty much outlines the treatment options.
I hope this helps
Glen -
- CommentAuthorkris4597
- CommentTimeMay 9th 2010
thanks glen for your imput.i got the meds filled today,but i don't start taking them till i hear from the dr.he's to call me with the results of the hepc.the chemo drug-cytoxan is 50mg.which i've to take 2 pills daily.the prednisone is 20mg.which i've to take 3 times a day.i don't know what to expect from the cytoxan,how sick will i get,will i lose my hair etc.the prednisone i'm leery of ballooning up,i saw my dad puff right up.i don't know what to expect.i'm still in the "i can't believe i got this disease" stage.not really upset,but just can't figure it out.if after 36 yrs i got something from donated blood,i'm going to scream.after all these yrs,something now pops up?? yes i've a myriad of problems all my life;this just doesn't make any sense.so i keep questioning it over and over.it figures i would get some disease i can't pronounce to well,but i can spell it-lol.a year seems so long to be on the chemo drug.i was told i've sjogren's as well,but don't have the symptoms.same with rheumatoid art.fibro i do have.you know what's amazing about this?i feel no different than i did a yr ago,then i'm told i've this and that ,things that show up in my lab work.amazing. -
- CommentAuthorkris4597
- CommentTimeMay 9th 2010
i was reading back on some of the other posts.i wanted to say i see a kidney dr,i really like him and he has compassion,not like the internist i did see.he kept telling me the decrease in kidney output was due to "aging" and nothing else.we ended up me questioning him and his thoughts and i highly doubt i will go back.my rheumatologist i've been seeing for 11yrs.he's good too.but he referred all this to the kidney dr.he said it's not in his ballpark.that's ok.finding dr's isn't easy in the area i live in.my raynauds has improved over the yrs.haven't had any trouble with it.but i do feel chilled and its important for me to stay warm because my sticky blood.i see that some people mention labcorp,i know my blood work went there.my biopsy went to boston,ma,for the amount of money it cost,they should've given me a ticket as well to go..lol.
i surely hope i get thru all of this! -
- CommentAuthoralcyon73
- CommentTimeMay 9th 2010 edited
Kris4597
I know exactly how you feel. It took me a long time to learn to accept my diagnosis. I consciously knew what my diagnosis was, and what it meant, but at an inner level, I found it hard to accept. It took a while. Eventually I had a flareup that left me struggling with the disease and that removed all doubt from my mind.
Prednisone is both a wonder drug and a curse. For most people it works really well as a treatment for cryoglobulinemia, but the side effects are numerous and some of them are very bad. In general, the side effects are not so severe at low doses. At 60 mg per day, you are likely to experience a lot of side effects. Usually rheumatologists will start a person out at a high dose like 60 mg per day and after a few weeks start to slowly taper it down to a maintenance dose, perhaps around 15 mg per day.
As far as the cytoxan goes, you want to watch out for bladder problems. It's notorious for this. Doctors will sometimes keep a patient on cytoxan until renission is well established , then will switch to an immunosuppressant like imuran for long term remission maintenance.
Glen