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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
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. Coogan'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 coogans thread and I think It is good that you have drummed up a nice support group for coogans 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
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