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Share your story: Autoimmune Chronic Urticaria(hives)

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  1.  
    • CommentAuthorhockeymom
    • CommentTimeOct 21st 2009
     # 1Report Post
    Hi, I have been lurking around for a few weeks now and decided to post about my condition. I started with chronic hives back in Oct. 2003 and at that time all they could find was that I had anitbodies to my thyroid. Thyroid levels were fine at that time but was put on a low dose of Synthroid to see if the hives would stop. They continued for 7 long months of torture. Then one day they stopped as suddenly as they came. I was fine for a couple years then I was diagnosed with Graves disease in March 2006. Was told to stop the Synthroid immediately because my thyroid levels were through the roof. My TSH was nearly undetectable. I waited for 6 weeks to see where my thyroid levels were and they were still way too high so I opted to take radioactive iodine to stop the thyroid from overproducing. I was fine with taking Levoxly for the rest of my life as long as I felt better. I did feel better until Dec. 2007 when suddenly the hives started again. I finally after many doctor visits and specialist have been diagnosed with autoimmunce chronic urticaria. The blood test for CU is called the CU index and is not FDA approved at this moment so my insurance company would not pick up the cost of the blood work. Now my doctor is currently thinking I may have autoimmune bladder disorder. It seems that my body is constantly making antibodies to different organs, soon my own body will be attacking every organ in my body. Anyone else feel this way? Anyone else have Chronic Hives? I know of one other person who has undiagnosed chronic hives and he works with my hubby.
    It seems to me that once you have one autoimmune disorder you wind up with several. My daughter also has been diagnosed with Sjogrens and Raynauds.
    Sorry for the long post.
  2.  # 2Report Post
    Hello,

    I also have chronic hives. This is the third time that I have had them - this time has lasted about 7 years. I have them everyday - some days I am covered with hives other days I might just have a few - but I ALWAYS have them. Mine are also autoimmune and medication doesn't help anymore. I have tried everthing with different combinations but with no luck.

    I am looking forward to more post on this subject and hope someone has found the answers to fix our problem.
    • CommentAuthorkatiesmom
    • CommentTimeOct 27th 2009
     # 3Report Post
    My daughter (age 5) has had hives since July. After multiple doc visits, it was discovered that she also has thyroid antibodies. Also, her ANA is positive (I believe it was 8). So far, she has no other symptoms and she has tested negative for all other diseases. She is on prednisone (6mg per day) and it keeps the hives to a minimum. She also started Plaquinil last month. Her doc hopes that will help and we will be able to go off of the prednisone.
    • CommentAuthorhockeymom
    • CommentTimeOct 27th 2009
     # 4Report Post
    dbarnes1985, Hi. How many years have you had chronic hives all together? I also have them everyday. I take 180mg Allegra 2x a day and Zantac 300mg 2x a day. They keep them under control to a degree. I wouldn't be able to live without some kind of antihistamine. I sometimes back all this up with either singulair or claritin. I started last month (Sept.) a dose of Colchicine .06mg 1x day to see if it would help calm the antibodies down. Not sure if it's working, too soon to tell. I pray that my meds don't stop working. Some antihistamines make me so sleepy it's not worth taking. I am glad I found others who have the same problems. Everyone who hears I have hives ask what I ate that I'm allegic to. I tell them nothing and that it's autoimmune related, they don't understand. People understand about lupus and other commmon autoimmune diseases but not CU.
    • CommentAuthorhockeymom
    • CommentTimeOct 27th 2009
     # 5Report Post
    katiesmom
    I am so sorry to hear your daughter is suffering and she is so young! Is her thyroid levels still ok? Mine were for several years before my thyroid became hyper (Graves). My ANA is also positive. Make sure the docs keep an eye on her thyroid levels. She is so young, I can't imagine having all these problems at her age. I took steriod only for a short time as they didn't seem to help a bit. It's not good to take steroids for long periods so it will be good if they can get her off the Prednisone. I have never taken Plaguinil and never heard of it. I recently started on Colchicine .06mg a day and does seem to help somewhat. Too soon to really tell if it will be long term. She would probably test positive for autoimmune chronic urticaria if the test was done. The test is not FDA approved so insurance companies will not pay for the test so many docs won't even suggest it or don't know about it. Took me several years and docs to finally find one who knew about the test. Now the docs are thinking I may have autoimmune bladder disorder. I haven't been to the specialist for this problem yet. Beginning to wonder if my body will attack every organ in my body.
    Good luck with your daughters health issues. I really hope she feels better soon.
  6.  # 6Report Post
    Hello again,

    The first time I had hives they lasted about 1 year and I was able to control them with medicine and they went away as quickly as they came. The next time they returned, I had them for about 1 1/2 years and they were controlled with medicine and then just went away again. This time I have had them for over 7 years. Medication controlled them for a long time they about three years ago medication just stopped working. Zyrtec and Zantac work sooooo good for such a long time. I have tried so many combinations and have seen so many doctors who have tried so many combinations - the last doctor had me on the same meds as you were on and we piggy backed at night or as needed with atarax. I just take that at night because it helps me sleep. I have tried many rounds of prednisone and my body is also gotten immune to that, last time I was on it - I actually started getting hives when I went down to the 30mg dose. I will NOT TAKE it again it makes me crazy. I will be put in the hospital before I put that stuff in my body! It makes me crazy. I all the kinds of hives you can get (and I wont bore you with the names) but the worst are the pressure hives and the really big hives that hurt as well as itch. I have sores all over me because I can't stop scratching! I carry a table knife with me everywhere because it is a great scratcher and doesn't break the skin when I scratch. Isn't that sad!

    I just found this sight and I am not sure what some of the things are - like the ANA. What is that? I have been going to alot of doctors and most of them have said "we are not going to be able to find out why you are breaking out in hives - cases like this, ones that have lasted so long are hard to figure out". I so sick of hearing that I could just vomit! Sorry about that. So I will try the regime that they put me on and it doesn't help and get discussed and don't go to another doctor. My husband has been asking everyone he knows if they know of a doctor that can help me and he thought he had found one. So we made the appointment and I asked him to go with me - he just can't believe no one can help me figure out why my body is doing this. We she is a really good doctor and ran alot of test and the test came back that my hives were autoimmune and those are the most difficult to treat. My body is attacking itself. She did find out that I have thyroid antibodies - which I am not sure what that means and frankly I am just so tired of doctors. I just found out this information and she is an allergist and would not treat the thyroid and said I needed to speak with my family doctor.

    What did your thyroid antibodies mean? Does this mean that thyroid medication might help? I tried an endocrinologist a couple of years ago and she didn't even bother running any test - she said it had been proved that the thyroid was not linked to chronic hives. So I looked at other things, but this last doctor found the thyroid bodies - I think all my numbers are ok or someone would have said something? I am just starting to look into the whole thyroid thing again.

    Sorry for this being so long -

    dbarnes
    • CommentAuthoralcyon73
    • CommentTimeOct 28th 2009 edited
     # 7Report Post
    dbarnes

    You post was excellent, not too long at all!

    I don't have urticaria, my autoimmune disorder is cryoglobulinemia, but I think I can answer some of your questions.

    ANA stands for antinuclear antibodies. It is an antibody that some people with certain autoimmune disorders sometimes test positive for. As far as thyroid antibodies go, I'd take that as an indication that the immune system may be attacking the thyroid gland. You probably need to follow up with your doctor on this so it can be addressed with the proper treatment.

    I know what you mean about being tired of seeing doctors constantly. I'm in a doctor's office constantly for one thing or another. It does wear on a person a bit. However, without my doctors and without the medication , I'd probably not be here to respond to you. The doctors and the medications are an essential evil in my case and I'm really glad that my doctors are able to treat my autoimmune disorder.

    Yes, prednisone has nasty side effects, particularly if you take it for a long time. I'm currently on prednisone and am slowly tapering off of it. It has been a miracle drug for me but the side effects are slowly taking a toll on me and I'll be glad when I can finally stop taking it.

    In any case I just thought I'd have a go at answering your questions. I hope you found this to be helpful.


    Glen
    • CommentAuthorhockeymom
    • CommentTimeOct 28th 2009
     # 8Report Post
    Hi dbarnes1985,
    Your condition sounds alot like mine. I started out with hives back in oct. 2003, never in my life did I have hives before. I was told about 5-6 years earlier that I had a positive ANA(antinuclear anitbodies). This means there is some kind of autoimmunity going on but all test on me were negative. They had tested for lupus, RA and some other AI diseases I can't remember. I got tired of running to the dr. all the time so I stopped. Until the hives started in oct. 2003. They at first thought I had Lyme disease but no other sypmtoms of lyme disease were present. Then on a visit with an allergist I was told that hives can sometimes be caused by thyroid antibodies and was tested and came back positive. At that time the thyroid was still working fine and was put on a low dose of levothyroxine to see if that would help. Well i guess it helped because the hives stopped about 6 months later. But then in March of 2006 I presented with hyperthyroid symptoms and was diagnosed with Graves. In june of 2006 I opted to take radioactive iodine to stop my thyroid from overproducing hormones. It worked and I feel much better and I take Levoxyl everyday for the rest of my life. But then the hives started again in Dec. 2007. Seen my GP who prescribed a new antihisamine called Xyzal but that made me too sleepy and didn't do anything for the hive relief. So I started back on Allegra 180 2x a day and went to see one allergist then another allergist in a teaching hospital who found out the hives were autoimmune. I now take colchicine with the other meds (Allegra 180 2xday, Zantac 300 2xday)to see if that will help and as of this writing seems to help somewhat. Not quite as itchy. I do still have swelling outbreaks(angioedema) on my face around my eyes and lips mostly. Very embarrasing when I look like someone punched me in the eyes and lips. Do you get the swellings also?

    dbarnes1985, you need to keep an eye on your thyroid levels. A GP or endo can do the tests for you. You may either become hypo(Hashimotos) or hyper(Graves). My endo also said that hives are not caused by thyroid anitbodies but the allergist said they could be. You may ask the allergist if you could try a low dose of levothyroxine(brand name Synthroid) or Levoxyl to see if it may help releive some of the hives. I'm not sure if it was the levothyroxine that helped or if they just wanted to go away on their own just like yours did. Post again if you have more questions. I have looked into our condition extensively and maybe can answer some of your questions. Take care.
  9.  # 9Report Post
    Hey,

    I am going to the Dr tomorrow to discuss the thyroid antibodies and see if that might possibly help. Yes I do have angioedema. I have impressed a few allergist with the size of mine. I have them all over my body. Have you tried zyrtec? I am sure you have - that stuff work really good for me for a while. Wish I could find something else that would work like that did!

    Since I have tried everything in all combinations the the last Dr wants to send me to a medical college in our area that has trials going on for cases like mine. I don't thing I want to do that right now because it is some pretty radical stuff and has not been proven. I am going to find something to fix this! I have to.

    dbarnes
    • CommentAuthorhockeymom
    • CommentTimeOct 29th 2009 edited
     # 10Report Post
    Hi dbarnes,
    Yes I have tried Zyrtec and it makes me too sleepy and then if I take it at night I have a hard time waking up in the morning. I'm fatigued all the time anyway so taking something that makes me sleepy doesn't work for me. My allergist had me try Doxepin which REALLY made me sleepy. I mean to the point I couldn't pick my head up off the pillow. My angioedema seems to stay on my face mostly but have had my tongue swell on one side.

    Glad to hear your heading to the dr. about your thyroid. Remind them to check your thyroid levels also. You really need to keep an eye on those.

    My last allergist is at a teaching hosp. He's located at Jefferson University Hosp. in Phila. It's quite a haul for me to see him but it has been worth it to find out what is going on inside my body. My next trip is to see a special urologist for my bladder. I have been having problems for years with frequency and docs have always told me it was UTI (nothing showed up in test) or just in my head. Basically could never find anything wrong so they brushed me off. But the new allergist at Jefferson seems to think my problem may be autoimmune bladder disorder. So much fun running to all these docs.

    Does anyone else in your family have autoimmine disease? My older brother was treated for Graves disease about 2 years before me. I had my daughters thyroid tested to be sure she had no problems and they found out she has Sjogrens and Raynuads. It is definatley running on my side of the family, but only started in my generation. I quess these things have to start somewhere.

    Keep me posted as to how you make out at your dr. appt.

    Take care, hockeymom
  11.  # 11Report Post
    Well, I went to ER last night because I thought I was having a heart attack only to find out that all the medicine that I am taking is eating a hole in my stomach! Glad it wasn't a heart attack. The saw all my hives and gave me a shot of steroids - which I was OK with thinking I would be hive free for about a week. The hives from last night cleared up very fast which doesn't happen with me unless I get a shot (some of my hives grow for 3-4 days). Well I started getting them again this afternoon - I just can't believe it!

    I went to the doctor today to discuss the thyroid antibodies and she said I was not a candidate for medicine. She said my numbers were normal and would not prescribe medicine for me. She did say she was going to test me for Lupus - I told her I have been tested for that so many times and it is always negative. Not sure why she is going to do it again. I started crying telling her I had to get some RELIEF because they were driving me CRAZY! I am so tired of seeing blood on my sheets and scabs on my body!!! You just have to scratch these stupid things. I live in Richmond VA and she is going to send me to MCV which is a medical college here to have a consult with one of their doctors, and she is also going to send me to UVA another medical college - I don't hold out much hope. I wonder if it will just be a big waste of money.

    I wonder if anyone has tried long fasting diet to try to fix this problem. I have fasted many times but not very long. I wonder if I try to fast for a long time if it would work? Or if anyone has tried a diet that would boost your immune syste. I eat pretty health but I do eat dairy. I have done many elimination diets that didn't work because it is not the food that is breaking me out it is my body attacking itself.

    Oh well....you take care too,

    dbarnes
    • CommentAuthorhockeymom
    • CommentTimeOct 30th 2009 edited
     # 12Report Post
    I'm sorry to hear about your trip to the ER and am glad you didn't have a heart attack. How many meds are you on and what kind?
    I hope if you decide to go to a teaching hosp. they are able to help. There has to be something out there that can at least help with the itching. I know how you feel. Before I found the combination that worked for me it was nearly impossible to live with. Back in 2003 I was told I couldn't double up on antihistamine because I would be overdosing. That allergist was totaly wrong. Another told me to take as much as I needed to feel good. Not better but not so itchy. The itching would wake me up and I would be really suffering and I didn't care what the doc said I took more antihistamine to feel better. I couldn't stand the ithcing. There were times I wished I would just die. At other times I told my hubby not to touch me because it would cause such severe itching. I break out where my clothes sit on my body such as waist bands, socks, rings, watches etc. You get the drift. The Colchicine seems to be working even though I'm still on antihistamines I haven't had any major out break for about a week, week and a half. I did have swelling of my eye and lip over the weekend, after I was at a halloween party. It seems if I have alcohol, even just a little bit I break out.

    I have not tried fasting as I was told it wouldn't help because food is not the allergic trigger. The anitbodies are the trigger and colchicine works like a suppressant on the mast cells that cause histamine to be released. The other option the doc told me was immune suppressant like you take after you have transplant surgery. It can be very dangerous to the immune system and you have to watch being around people who are sick. The colchicine is the same way but not as strong. I still have to be careful of sick people as my immune system is compromised. Hard to do when you have kids who go to school and bring home all kinds of sicknesses. Now we have to worry about H1N1 which just showed up in a person I work with.

    Well, I hope your feeling somewhat better. I forgot to ask what happened at the hospital? Did they put you on something for the hole in your stomach? Did they say you had an ulcer? Will it go away with meds?
    Sorry for all the questions, just curious.
    Anyway, have a great weeked and Happy Halloween
    hockeymom
  13.  # 13Report Post
    Well, the meds I am on right now are similiar to yours, but I also take atarax at night 3 pills. They also put me on Lexapro a couple of years ago thinking it could be stress and hoping that it would help - didn't - but it does help with the anxiety of it all. I am also low on Vit D so I take that also. I have SVT so I take medication for that also.

    I go in next week and they are going to look at my stomach to make sure I don't have an ulcer. They gave me a stomach cocktail in the er that helped and put me on acid blockers. You would think with as much zantac as I am taking that would cover it!

    I am getting off all meds except the Lexapro and my heart medication. It is not working any way. I think my body has become immune to it. I have been on combinations that have worked for me quite wonderfully - they just stopped working.

    When I told you they wanted to try some drastic things it was the medicine that people who have had transplants take. But they do not know fully all of the side effects. I told her I would not do that because I don't want to "possibly" fix one problem to have something that could be much worse.

    I think I am going to try to fast - even though I know it is not the food that is the trigger. I am hoping that if I can get my liver cleaned out maybe the medicines would start working or the hives will stop. I am not sure but I have to do something! These things are controlling my life.

    Have a great day,
    dbarnes
    • CommentAuthormonicao
    • CommentTimeNov 16th 2009
     # 14Report Post
    Hi,

    I started having hives about 1 1/2 months ago and it seems as if they are not planning on going away anytime soon. I tried everything initially and it was making me crazy taking everything without relief. I even tried Predisone and it made me crazy and I got every side effect. I got off of everything and tried Allegra (fexofenadine) 180 mgs and Doxemin 20mgs at night and I get a few hives in the evening and in the morning, but they don't itch nearly as bad and I can sleep. I do have to say that when I first started these I was extremely tired, but if you look at the information on the medication it states that it should wear off as you continue taking them. And it has. So, now I feel pretty normal without the side effects. So, if you can manage for a week on them and it's working especially the Doxepin, I would try it. I know this has been a wonder drug for me since nothing was working. I tried Zyzal, Zrtec, Zantac, Ratadine and Singulair and they did nothing. I asked to get on Allegra and he gave me the doxepin and finally relief.

    I still don't know my problem. My TSH is now on the high end of normal, but not enough to make a difference. Thanks for the info the test they can do on chronic urticaria. In the process of this I plan on doing an embryo transfer in January which will require me to take other medications and stop these for a little while. They are requiring me to take the synthroid to bring my TSH down since it will help with implantation of the embryo. I hope I can manage, but since I know the hives may not go away for a while, I plan on moving forward with this. I've heard that pregnancy sometimes changes things, so I'm hoping I end up pregnant.

    I've had hives for many years that are Cold hives that I've managed and just a hive here and there for no reason. I think this may have been stressed induced or medically induced from a procedure since they started around that time. It's interesting that they started slowly with my head itching and then hives on my face and neck and then all over. This is why the Dr. seems to think they are chronic hives and I tend to agree. I've been tested for autoimmune diseases and they didn't find anything, but I guess it could show up. My dad also gets hives and has allergies, so I definitely think it's hereditary. I really hope my kids don't get it, but time will tell.

    I just wanted to post and say hi since I learned from the posts you guys had. I hope things get better.

    Take care.

    M.
    • CommentAuthorhockeymom
    • CommentTimeNov 23rd 2009 edited
     # 15Report Post
    I"m glad you learned a little something from my posts. I wish you all the luck with your embryo implant. Maybe it will make a difference with your health. But if not you'll have a beautiful child anyway. Unfortunately there is a big chance your child will have some sort of autoimmune disorder. My daughter was diagnosed with Sjogrens and Raynauds at age 16. I took her to be tested for thyroid disease and they found that her ANA was positive and they sent her to a rheumatologist who tested further and found she had Sjogrens antibodies. She doesn't have many symptoms yet, just achy joints at times. The Raynauds was diagnosed because her hands and feet turn bright red when cold and they take forever to change back to normal. And she is an ice hockey player. Not too convenient for her.

    I started posting about the CU index test because it seems so new and not many docs seem to know about this blood test. It's awful when you suffer with CU. Your skin is on fire and itchy all the time, even when there are no hives present. I have in the past tried doxepin too and it made me really sleepy. I mean REALLY sleepy, to the point I couldn't get up in the morning. My new regimen with colchicine added once a day seems to be helping. No major outbreaks for about 3-4 weeks. Some minor hives in the morning but nothing like they were. My doc also added singulair at night along with the the allegra 180 and Zantac 300mg. So far so good. Now that I have said that I'll have a major outbreak tomorrow. lol

    Again I wish you alot of luck with your embryo implantation!

    Hockeymom
    • CommentAuthormonicao
    • CommentTimeNov 23rd 2009
     # 16Report Post
    Hi Hockeymom,

    I just wanted to update and let you know that my Dr. actually did test my CU index and it came back negative for CU. So, something is causing my hives. I'm really thinking now that it's related to hormones due to them being stronger right before my period and through ovulation and then they get better. So, the additional progesterone seems to calm them down. I had just weaned my baby about 2 months before this started, so my hormones were trying to get back to normal. I'll see more as I go through this process with the embryo and if it's related. I'll definitely watch my kids for any kind of autoimmune disease since I'm afraid they may down this path. My oldest keeps telling me she itches because she see's me scratching my hives. It's funny, but also sad that she has to even think about that. I hope and pray they will go away soon.

    Thanks for the good luck wish. I'll keep you posted.

    Monica
    • CommentAuthorrgillis
    • CommentTimeNov 24th 2009 edited
     # 17Report Post
    Hi,

    I am 46 and female. I began suffering from extreme uticartia back in February, coincidentally when I was trying to eat better by avoiding red meat and by incorporating more tofu into my diet. I had deep-seated, painful swelling, mostly in my palms and on the soles of my feet, but the uticartia would travel around my body--sometimes on my back, or legs, or arms, or hands or feet, also in my gums and on my lips, with some tooth pain when I had hives in my mouth.

    I saw my primary care physician and a dermatologist, both suspecting some sort of vasculitis. I was put on as a predisone burst pack and was told to take as much benadryl as I could possibly stand (when ended up being quite a lot). I was having extremely bad and painful asthma, and some nausea--there were a few times I thought of driving myself to the ER. The dermatologist took a biopsy of one of the hives and was happily surprised to discover that I only had uticartia, not vasculitis. I also switched to a hypoallergenic laundry detergent, as I noticed it more after putting on freshly laudered clothes. I also saw my dentist while I was at it, thinking for a moment that a decaying filling could be behind all the mayhem.

    Meantime, as the hives persisted, I sought a second opinion from a highly-regarded rheumatologist, who also suspected some sort of vasculitis. She put me on colchicine 0.6mg BID,w hich, within a few days, took the "edge" off the hives, and got rid of that anxiety-provoking "about to flare" feeling. Colchine is an old-school anti-gout medication that is now being used off-label for a host of other inflammatory conditions.

    But I still could not identify the hives' trigger. I began to notice that the hives happened more frequently about two hours after eating. Then I began to pay more attention to everything I ate. Processed meats (cold cuts, sausage, hot dogs) were the worst, also wines, cheeses, etc. etc. One day I mentioned to a co-worker about my hives/eating situation. She said she had a similar experience with her daughter whenever her daughter ate soy or tofu. They had to rush her to the ER because she was having difficulty breathing. Turns out her daughter had a sulfite intolerance. Colchicine caused about one week's worth of mild diarrhea, but it was well worth taking because between the prednisone and the colchicine, I needed to "calm my body down" in order to get to a base level of no hives so I could pay more attention to what might be causing them in the first place.

    I immediately googled sulfite intolerance. Wow! Every type of food I noticed a hive-like reation to was on the list--including tofu, wine, cheese, processed meats, jams, jellies, dried fruit, etc. etc. Now I knew I was not crazy, and not suffering from a more serious vasculitis diagnosis! I still have not figured out the freshly-laundered clothes connection, or the hives I get after I receive a massage, but if I avoid highly processed, bleached, or dried foods I can usually avoid a flare-up.

    So my question to you is: what makes your hives "flare?' If you notice it more after you eat certain foods, it could be a food allergy or intolerance. Perhaps not sulfites, but it is well worth paying more attention to what sets you off to see if there is a food/hives connection.

    My ordeal took eights months of sleuthing, a number of medical visits, blood tests, a brief sting with immunosuppressors, and a small biopsy. In the end, though, I solved the puzzle myself by paying very close attention to what might be my hives trigger.

    Good luck to you!
    • CommentAuthorKaren1963
    • CommentTimeDec 1st 2009
     # 18Report Post
    My name is Karen and I had chronic urticaria for 6 1/2 years while I was in my 20's. I cannot remember how they began, but I remember vividly being in agony everyday with huge hives all over my body. Some days, I couldn't go to work because they were in my eyes, nose, mouth and down my throat. When I walked, it felt like I had rocks in my shoes. I would rub my back raw against the carpet just to get a measure of relief, but of course, the next day, those hives were gone and I'd have rug burn in their place! I went to many different doctors, some tried topical treatments, others tried oral meds, and I even had a biopsy, but no one figured out what was wrong. About 5 years into this ordeal, I got very sick with bronchitis and pleurisy. As soon as I was place on IV antibiotics, the hives disappeared. As soon as the IV's came out, the hives were back. My doctor's were puzzled, and eventually, it was decided that my immune system was breaking down and demonstrating this externally. I was diagnosed, 15 years ago, with common variable immune deficiency. Since I have been on IVIG (intravenous immune globulin) to treat the CVID, I have never had hives again. (Thank You God!!)
    Now that it has been 15 years since I started being treated for the primary immune deficiency, I have developed numerous auto immune diseases. It is frustrating, but I am alive, and that's a good thing!
    • CommentAuthorhockeymom
    • CommentTimeDec 2nd 2009 edited
     # 19Report Post
    Hi rgillis, Thanks for the info about food allergies. The only thing that I find that triggers the hives is stress and alcohol. But with taking the colchicine they are much more manageable even though I still take lots of antihistamines. Better than being itchy.


    Hi Karen1963, Very interesting info about CVID. I looked that up on the internet to find out exactly what that was. Unfortunately, my body is making plenty if not too many anitbodies. But maybe I'm not understanding what exactly CVID is. My allergist explained to me that I'm making antibodies to the mast cells called IgE that release histimine and that is what is causing the hives. My next step is to find out if I have autoimmune bladder disorder. I have a dr appt next week with a urologist. Been down this route before with no findings but that was about 9 yrs ago and things have been getting progressively worse. What other autoimmune disorders do you have? Do you find you don't get sick with colds etc. while everyone around you is getting them? I have been treated with Graves and now the hives. My 19 yr old daughter has Sjogrens and Raynauds (diagnosed at 16) and she is going to a new rheumy next mo. She didn't like the first one.
    I'm right there with you, no matter what they find I'm glad I'm still alive and can relatively function like a normal human, most of the time. When I try to explain my problems to people without immune disorders they just don't understand. They can't comprehend that the immune system can go awry and attack it's own body. It's nice to come on here and find people who understand. Thanks for listening.
    Hockeymom
    • CommentAuthorKaren1963
    • CommentTimeDec 2nd 2009
     # 20Report Post
    Hockeymom, you asked what auto immune disorders I have and they are as follows: Sjogrens, inflammatory arthropathy, chronic fatigue syndrome, fibromyalgia and allergic rhinitis. As to my getting sick or not when others have colds, etc, if I weren't receiving IVIG monthly, I would be sick every day. I have been hospitalized 19 times, and when someone would sneeze or cough in my direction, I would be out of work for weeks with serious asthma/sinusitis and acute bronchitis. I make no B cells, therefore, no antibodies are produced. My IgA & IgE appear to be at a good level, but my IgG levels are ridiculously low. Normal is 750-1500, or so. Mine was less than 200 when finally diagnosed, and even with IVIG treatment, it rarely gets above 550. It is odd that a person whose immune system is this defective can have a part of that same immune system attack itself. More and more long time primary immune deficient people are developing these auto immune syndromes and treating them is challenging. Obviously they can't suppress the immune system for fear we'll catch something and become seriously ill. Thank God I have a new rheumatologist that seems to be on top of all of this. She is working closely with my immunologist, so I think I'll keep this her!!

    God bless you while you work to find the help you need to feel better. It's a struggle, but if we don't give up, we can inspire others!!
    • CommentAuthorhockeymom
    • CommentTimeDec 4th 2009
     # 21Report Post
    Karen1963, Your condition sounds so different than the normal autoimmune disorder. Since I have been taking colchicine, my dr told me to be careful of colds and viruses as my body may not be able to fight infection well. Knock wood, I haven't had that issue yet. My family members all have had colds and they seem to bypass me. I was concerned about H1N1 as that was going around my workplace, but I didn't get sick with it.
    As I said before, my daughter has Sjogrens. Do you have any symptoms of dry eyes or mouth etc? She doesn't have any of that yet but she does have aching joints. She hasn't been to the rheumatologist lately because she didn't like him. We just got a recommendation from our GP and we are going to make an appt. after the holidays. He said I should make one for myself too. All these drs. It gets a little much running around to see a different dr for every immune disorder. I wish there was one who could take care of them all.
    You take care of yourself and if I don't hear from you again have a great holiday.
  22.  # 22Report Post
    Hi ladies! I almost cried when I read your blogs! Though I hate that anyone else is getting hives, it is somehow comforting to know that I do not have some crazy disease that has yet to be diagnosed ! The "rocks in my shoes" comment was perfect! In the past, I've told my husband that I feel like someone cut a golf ball in half and put it under the skin on the heal of my foot!

    Here's my long story short, diagnosed with Hyperthyroid/Graves Disease, had my thyroid radiated, and have been on Synthroid since. My hives started around 1 year ago. I went to the doctor thinking I had some kind of an insect bite because of the "bullseye". Everything came back negative. Then I noticed the same thing a few days later but this time, it made my joints hurt so I went to a rheumatologist. No arthritis! Then the dermatologist, allergist, Primary Care, and finally, back to my Endocrinologist. I have been having a hard time because from everything I've read, basically, I just have to live with it.

    One thing I didn't hear either of you mention, if you have any kind of "skin trauma" as the doctor called it (how silly is that), like getting a massage or your bathing suit strap is too tight around your neck, does it cause hives? Even certain shoes, doing yard work, etc. Anything that might irritate my skin. I want to see how deep our connection runs! : )

    Thanks for taking the time to comment!
    • CommentAuthorhockeymom
    • CommentTimeDec 9th 2009 edited
     # 23Report Post
    Hi lorismith3, Isn't it amazing we come to a web forum to feel that we are not alone with our diseases. Even people in my family that know I have been suffering for years still don't quite understand the autoimmunity process.
    To answer your question, yes I get hives in areas where clothing may be snug but not overly tight, such as sock elastics, waist bands, watch bands, doing yard work makes me itchy especially where the grass, weeds etc. have touched my skin. But I'm not allergic to any of these things according to the scratch test. I sometimes scratch my skin hard and a couple hours later or even the next day have hives in that area. It won't happen while sitting in the dr. office. Not there long enough. Sometimes I feel ithcy but nothing is there but feel like there should be a ton of hives!
    Unfortunately we do have to just live with the problem, but control it with meds. Have you been tested for autoimmune urticaria? Not that it will change the fact you suffer from hives but at least you'll know it's nothing your allergic to causing them. As I said in previous post, the colchicine seems to be helping. No major outbreaks for about 6 weeks now. Small outbreaks during stressfull sitiuations and usually they come out the next day.

    A new develpment is I have just been diagnosed with interstitial cystitis (bladder disorder). They are uncertain whether that is an autoimmune disorder or not. But either way I have been suffering for years with frequency and urgency and my primary care dr. would just pooh pooh it off as "well your getting older"(I'm only 44). He did test me for diabetes and UTI but both came back negative but would show blood on urine test. Finally after years of complaining about this problem my allergist mentioned the bladder disorder that may be autoimmune. Saw the urologist and got a diagnosis and now am starting another new medicine. Oh boy, more meds!

    Thanks lorismith3 for taking time to read about my troubles. Take care of yourself.
  24.  # 24Report Post
    Hi All!
    I have so needed a site to discuss these issues,( maybe a little venting, too). I have felt so alone at times regarding what my body has been doing and as you all know that does not help matters at all. I am 52 years old, Diabetic, Hypothyroidism, Hypertension, GERD, Osteopenal, PSD and just recently diagnosed with Glaucoma. I had rashes on my legs last year which my Doctor told me was Yeast because that is something that Diabetics get. But this summer I got a severe rash on my stomach which sent me to the emergency room and the Doctor telling me he might have to call IDC ( it was truly ugly). I was sent to a surgeon then a Dermatologist. The Dermatologist said he knew what was causing the problem, Autoimmune of course, was put on prednisone which helped my rash but elevated my blood pressure at one point to 176/143. So, obviously that is out of the question, now. Four days ago, I started getting hives on my legs and through out the day extended to cover my entire body. My blood sugars have been elevated so at my next Doctors Appointment I figured we would be discussing that as a major cause of these skin problems. Because of this site I feel I can now go in and ask more appropriate questions to hopefully get correct testing done. I am so sorry to hear that so many of you have suffered for such long periods of time and selfishly hope I won't, over a year of periodic skin problems is enough, the constant itching awwww, but it does help to know that I am not alone. (It also doesn't help having to deal with Glaucoma right now, too. but that is a different matter.) We, who suffer from these types of diseases and disorders can feel isolated because dispite the fact that we continually have these problems and suffer, others around us who don't can get tired of having to deal with these illnesses. And as long as we are having to deal with these issues then this becomes "Our Cause" which others may not understand. So, having a Forum is truly wonderful. I am saddened that I am not alone, but also grateful.
    • CommentAuthorhockeymom
    • CommentTimeDec 14th 2009
     # 25Report Post
    lorismith3, I also forgot to put down that I also get angioedema of my lips, eyelids, under eye and sometimes one side of my tongue. I look like something from Star Trek the next generation. I really hate to go out when I look like that.

    Hi Rebecca, I wanted to ask what PSD is? I tried googling but had no luck.
    I am also glad I found this forum. As I have said in the past, even people in my own family(my mother-in-law, father-in-law) don't quite understand the autoimmunity process. They keep thinking the hives are triggered by something I ate or touched. I keep telling them my own body is producing them, not an allergen. My husband has a heart condition and at this point I take more meds than he does. It's hard to keep track of refilling them all and taking them on time.
    Sorry about your Glaucoma condition. At least its treatable. My mother-in-law has it. Is your diabetes autoimmune related? My sis-in-law has really bad diabetes and had a major heart attack at the age of 37. A 1/4 of her heart was damaged and beyond repair. So just take care of yourself so you don't end up like her. She now has an implantable cardioverter defibrillator in her chest. I'm used to that, my hubby has one also. But his was from a virus that attacked his heart when he was young.

    Well I have to go now. Everyone take care.
  26.  # 26Report Post
    Hi hockeymom, I'm sorry I missed putting the T in there, It's PTSD, Post Traumamatic Stress Disorder. I had an emotional breakdown in 1991 due to being molested as a child.
    I know what you mean about meds. I gag sometimes because there are so many to take. I am also hoping that my Glaucoma is treatable. Sometimes I feel that is all I have is the hope that there is a reason for all this.

    Personally I wish research was done more on the Pituitary Gland. I feel that that is where the main problem lies. I wish I could do something to not only help myself but others, too. On one hand we have an Autoimmune system that seems to be excellent yet attacks us, the host. Why aren't we compatible?

    I'm not sure if my Diabetes is Autoimmune related. It is hereditary for sure. My Mother died from effects of the disease. So, did my Grandfather and one of my brothers commited suicide because of all the complications caused by the disease. Environment I'm sure is also a factor. But, they also had Hypothyroidism, too. Which each didn't get any testing for it until after Diabetes was diagnosed. For some reason Doctors did not test for it. I had been feeling some of the severest effects of the disease and none of my doctors tested for it. My doctors made me feel it was all in my head. I'm sure some of you has had that happen to you. Through my own research I got enough information to believe that I was suffering from Overt Hypothyroidism and requested the simple blood test. And of course that's what it was. I believe that was in 1994. A lot as happened in the Medical Community since those years. Over the last few years their focus and mine has been on the Diabetes,though, but through this site I am beginning to think it all goes back to the thyroid gland and the Pituitary Gland. Actually the Autoimmune System. Hehe, I am trying to motivate myself to be an active participant instead of just letting this keep happening and never understanding why.
    • CommentAuthorhockeymom
    • CommentTimeDec 15th 2009
     # 27Report Post
    Sorry to hear about what happened to you as a child. I too, had a traumatic childhood. My parents divorced when I was 2 and my maternal grandmother took care of my 2 older brothers and myself til I was 7 while we lived with my father. Strange situation. My mom was the one who left, and left us with our father and hoped she could get custody later. The courts didn't see it that way and my father fought her all the way. The courts called it abandonment. The mean time my father remarried to a woman who had a son and hated little girls. So I was mentally abused by her. My brothers had it better but not much. She really hated me. There were things that went on that I have never talked about in my entire life. Enough about the retched past.

    The only thing I can say about my autoimmunity is that I don't get the colds and sicknesses that the rest of my immediate family get. I feel like I am coming down with one and it never develops. But then I have all the other problems like hyperthyroid(Graves) and having the thyroid radiated to hypothyroid. The autoimmune urticaria and now some bladder disorder called interstitial cystitis. They are uncertain whether that is autoimmune related. But people who have other AI disorders seem to get it more often.
    I sometimes wonder if my immune system will attack every organ in my system til it no longer works. Wonder if that could really happen?

    Rebecca, what kind of thyroid med are you taking? Just curious. I take Levoxyl 100mcg a day. I understand what you mean about the Pituitary gland maybe all the start of your problems. Aren't they all part of the endocrine system and that could cause your thyroid problems and diabetes? Hum, something to consider. Have you brought this up to your dr.? Do you see an endorcrinologist or GP? I gave up seeing the endo because he was doing the same thing my GP was doing. Blood test for thyroid function and adjusting meds if need be. I don't have diabetes even though I believe it ran in my fathers side of the family. His mother died when he was young and I don't know what of. But his Aunt who raised him had it real bad. So I wonder if she had it too.
    Wow, I could go on and on about my problems.
    • CommentAuthorJenTN
    • CommentTimeDec 16th 2009
     # 28Report Post
    Hello. This is my 1st post here.

    I am a 28 year old mom of 2. At 15 I was diagnosed with Lupus (SLE) and Hashimoto's thyroiditis. I have since been diagnosed with IBS, Interstitial Cystitis, and Migraines.

    My 7 year old daughter has been breaking out in hives almost daily for 4 weeks now. This was following a diagnoses of Mononucleosis (they weren't brought on by antibiotics). She also has facial swelling and wheezing/coughing, even with restricted physical activity. She also has had very small amounts of blood in 8 or 9 urinalysis in the past month and a half. Nobody can pinpoint cause the hives Her sinuses are also completely blocked, depsite a round of Bactrim, Zithromax, and 2 rounds of Prednisone.

    Before the Mono DX, she complained of joint pain and limped, but I thought it was psychosomatic or related to tired muscles becuase she had started comptetitive swimming recently.

    Yesterday I took her to a rheumatologist (she has seen a cardiologist and nephrologist also). He did bloodwork, immune and autoimmune (he's also an allergist/immunologist). He suspects something like my mother has (Reiters) maybe Psoriasis arthritis because she also has Psoriasis apparantly and cannot fully bend her big toes to 90 degrees even when he pushed down on them. He is the only doctor who believes all her symptoms are related to one underlying condiotion as I do.

    I am keeping daily logs of everything she eats and all her med doses and symptoms. I think most of the drs think I am crazy, but it's scary to see this in a 7 year old. This year alone she's had a staph infected spider bite, bacterial skin infections, and cat scratch fever.

    My ex husband and I spearated last year and she has suffered greatly from that, so her couselor is trying hypnotherapy to see if any of this is from stress. I think she has an immune or auto-immune disease that is flaring from stress. The only times my Lupus flares badly (fevers, extreme fatigue, etc) is during extreme stress.
    • CommentAuthorhockeymom
    • CommentTimeDec 18th 2009
     # 29Report Post
    JenTN, it breaks my heart to read your post about your daughter. I can't imagine being her age and having so many health problems. Your are doing the right thing by taking her to all the drs she needs right now to get the right diagnosis. Don't give up. Sometimes it can take years to find the right one.

    I know exactly what you mean about the stress. My hives really flare when I'm under stress.
    I have to go but keep me posted as to what they find out about your daughter.
    hockeymom Jean
    • CommentAuthorJenTN
    • CommentTimeDec 22nd 2009
     # 30Report Post
    Thank you hockeymom. We are now on day 11 hive-free. I am hoping that maybe the hydroxizine is working,and it's not just that she came off 5 days of prednisone a couple of weeks ago.

    When I googled the Psoriatic Arthritis, the symptoms match hers. I hate the fact that she may have this, but it is less scary (I think) than the possiblity of Lupus, which is one thing they have ruled out.
    • CommentAuthordeserae
    • CommentTimeDec 28th 2009
     # 31Report Post
    I am 29 and have been suffering from Chronic Autoimmune Hives for more than two years now. I tried tons of antihistamines and they didn't help me at all. I tried steroids, but that was not a long term solution, and didn't completely fix the problem anyway. I was covered head to toe almost every day. My eyes, lips, mouth, hands, feet, and ears would start swelling up. I went and saw six doctors before I could find one that would really listen to me and understand that I needed to try something else besides antihistamines, and that there wasn't anything I could figure out that was causing my hives. No food, alergens, or anything would make a difference on my hives. Only pressure, heat, hot water, or itching make them worse from what I can tell. Finally my doctor tried Cellcept, which worked a lot better than anything else I tried. Cellcept is an immune suppressant drug. Next, I tried Methotrexate, which worked better than the Cellcept.
    My doctor just started me on Enbrel two weeks ago. He said that he has seen a lot of success with people like me. He has had two patients with hives for more than 20 years, and after they started on Enbrel they have completely cleared up and been able to stop the medication. So far I haven't had hives for 5 days. A record for me! I am so excited that this might be the solution, but I am trying to not get to excited, in case it doesn't completely get rid of the hives.

    It is nice to know that there are people like me going through some of the same things. I also have vitiligo, which is another autoimmune condition.
    • CommentAuthorhockeymom
    • CommentTimeDec 29th 2009 edited
     # 32Report Post
    deserae, so glad you found something that is working for you. It is awful when you are in so much agony and no one understands, not even drs. My GP is very understanding but just didn't know what to do for the itching except antihistimines. I now take colchicine (works somewhat like an immune suppressant) and I was hive free for about 2 months when I came down with an awful cold and they are back but not real bad. Just some on my arms and legs in the morning. And some swelling on my face. Isn't Enbrel for RA? Besides the vitiligo, do you have any other autoimmune disorders? I know about vitiligo, a friend of mine has that. What kind of dr orderd the Enbrel, was it a rheumatologist? I am going to see a rheumatologist next month and so is my daughter. She had one before but she didn't like him. So I figured I better make an appt to see the new dr. also.
    I thought I would never be rid of the hives, but am glad they are much better. I just can't wait to get rid of this awful cold, I have a really bad cough with this one. I haven't been picking up colds much but I guess I jinxed myself because I got a doozy of one this time. And it had to start right before Christmas that I lost my voice on Christmas day.
    It is so nice to talk to others who have the same problem as me. I don't know of anyone personally who has this problem.

    hockeymom Jean
    • CommentAuthordeserae
    • CommentTimeDec 29th 2009
     # 33Report Post
    Yes, Enbrel is normally for RA or psoriasis. My dermatologist also does medical research with the university and he is currently working on a study for hives and Enbrel. He knows a lot about hives, more than any other doctor I have been to and he is willing to try a lot of things. I'm not part of the study because I didn't want to wait to start the medication.

    I don't have any other autoimmune disorders, but I have a family history of them, so hopefully I don't get any more. The vitiligo started when I was 25 and the hives at 27. Luckily for me, I am pretty fair skinned so the vitiligo isn't too bad even though I have some large patches on my face.
    • CommentAuthorhockeymom
    • CommentTimeDec 30th 2009
     # 34Report Post
    A dermatologist perscribed Enbrel for you!? Suprising to me. My first bout with hives was in Oct. of 2003 and was sent to a dermatologist. To me they didn't seem to have any answeres except they could be part of an autoimmune disorder(at that time I only had been told about my positive ANA). They biopsied a hive from my arm, which I am now sorry they did as I have a scar there, and told me they were definatelay hives. dah. It seemed to be a waste of time and money.

    Where do you live, sounds like an interesting study. I wish I knew of a study near me, I might par take in that one.

    Alot of people that I know with autoimmune disorders seem to have at least 2. The only person who I know doesn't is my brother. He only had Graves. I don't talk to him much, he lives way on the other side of the country(CA). I did ask him if he had any other problems with autoimmune disorders and he said no just the Graves. It seems that the disorders started with my generation. My mom doesn't have any and as far as I know my father didn't either. Not sure about my grandmother on my fathers side though, she died when he was just a child but I don't know what of. But he had an Aunt that had really bad diabetes. Which I know diabetes can be autoimmune related. My moms half sister has Crohns disease. Not sure, I thought that might be autoimmune.
    • CommentAuthordeserae
    • CommentTimeDec 30th 2009
     # 35Report Post
    I live in the Salt Lake City, Utah area. I know what you mean about the dermatologists, because I went to several, and I got a biopsy scar from a hive on my arm too! If I would have thought about it I would have done it in a different spot because I was covered head to toe. But I was so miserable I just didn't care at the time.

    My mom and brother have thyroid issues, and my dad has adult onset type one diabetes. I have several relatives with celiac disease, and one with MS. I feel lucky that I didn't get those, even though hives pretty much suck.

    I keep getting my thyroid checked just in case. How old were you when your thyroid problems started? How long do your hive bouts normally last?
    • CommentAuthorhockeymom
    • CommentTimeDec 31st 2009 edited
     # 36Report Post
    I was 38 when I had my first bout of hives and then found out shortly after about the thyroid antibodies. Those hives lasted for 7 mos and mysteriously went away. Then in March of 2006 I was diagnosed with Graves and took the radioactive iodine in June 2006, I was 40. My last bout of hives started Dec. 22, 2007 and are still going on. So it's been just over 2 years with this bout. I just was diagnosed in Sept. with autoimmune chronic hives. Before they were just calling it idiopathic chronic hives. My GP hates that word idiopathic, he says it sounds like they are idiots and just don't know. So he never gave up trying to find an answer.

    Itsn't it wierd, I felt the same way when they did the biopsy on my arm. I just didn't care at the time. Now I wish I had picked another spot not so noticeable. And yes the hives really do suck. Others think well it's just hives, but they make you so miserable. I feel tired when I'm having a really bad outbreak and my skin is on fire and so itchy. And when the angioedema strikes my face I feel I look like some kind of alien from Battlestar Gallactica. My hubby at one time said I have the right to be moody, but I don't think he really meant that because he tells me all the time how moody I am. Well if you felt the way that I do you would be too. I guess I shouldn't compain too much, they have been much better lately.

    I've been venting enough. Thanks for listening.

    Jean
    • CommentAuthordeserae
    • CommentTimeJan 6th 2010
     # 37Report Post
    Sounds like we have had hives for almost the same period this time. Mine started Dec 15, 2007. I know what you mean about the anioedema. One time my eyes swelled shut and my lips swelled up and it was horrible! Ever since I started immune suppressant medication, only my lips swell up. They were swelling up once a week or so, but on the enbrel it has been one time in the past month. I am really praying for my hives to give me a break, I could really use it. I have been dreaming of hot tubs, and when everyone at work talks about it I get jealous. I can't even get a pedicure without my feet breaking out in hives from the hot water!

    I don't know if you have tried it, but the only thing I have found that relieves my hives is Sarna anti itch lotion. It stinks a lot, but it soothes the hives right away. I have gone through so many bottles! I tried aveeno and eucerin first, but they didn't really do the trick. Anyway, I hope you are feeling better!
    • CommentAuthorhockeymom
    • CommentTimeJan 7th 2010
     # 38Report Post
    Thanks for the info about Sarna. I have not tried that but will next time I'm having a bad outbreak. I have used Aveeno body wash and it only helped with the really dry skin I have not the itching. Since I have been taking the colchicine I haven't had any real bad bouts. I had a few when I had a cold the last few weeks, but I can handle them. I jinxed myself when I said I didn't get sick with colds that often because this cold I had a really bad cough. It's been 2 weeks and I'm still coughing but it is getting better.
    I haven't had any swellings since my dr. added singulair to my line up of drugs back in Nov. I take the singulair once a day at night with a 180 Allegra and 300 Zantac. I sometimes feel like I should try and come off my antihistmines to see what happens. But it's never convenient. I don't want to have a bad outbreak when so much is going in my life right now. With the holidays just ending, now I'm concentrating on having the family and friends over the house for a party for my sons 16th birthday. He's my youngest, and I can't believe he's almost 16. He was born 8 weeks premature and you wouldn't know it. He was 4lbs 12ozs when he was born(I was told big for that age preemie), came home weighing 4lbs. 9ozs and now he's 6'3" and about 170lbs. Boy I miss those baby days. Well, all except the part when he was on a heart/apnea monitor.

    Enough of my rambling. I was reading about Enbrel. You have to take that by injection? How many times a day do you have to take that? I'm not sure if I could inject myself. I always said I would make a bad diabetic if I had to take insulin shots. I hate needles. I could never be a drug addict who gives them selfs needles. No way couldn't do it. I tolerate them when I have to give blood, but to give myself a shot, I don't know if I could do it. I'm chicken, bock, bock!

    Well I have to go. I hope your feeling better too.
    • CommentAuthorPenney
    • CommentTimeJan 26th 2010
     # 39Report Post
    Hello, I'm new to this site but can relate with alot of you. I've been to many doctors over the past years since the mid 1990's. I have hives now every day to some degree,some days are few and others are fully covered. I have taken every antihistamine known and have been on a regimine of up to 4 different types at a time as well as prednisone with little effect. Sick of Doctors and wrong or no dignoses. I have a 23 year old daughter with begining symptoms of the same. I feel like a touch me not because of what I call pressure point hives. This is not caused by stress,realized or suppressed. I dont want their antidepressants just an answer.
    • CommentAuthorhockeymom
    • CommentTimeJan 27th 2010
     # 40Report Post
    Hi Penney,
    It is amazing to me how many people I have come in contact with on here with the same problem. I don't know of anyone personally even though the dr.'s tell me it's quite common. I really wonder how common it really is. Have you been tested to find out if they are autoimmune? I have tried prednisone in the past and gave me no relief either. I am finally on a regimen that is helping. I did forget to take my colchicine and antihistimines yesterday and I broke out slightly with hives last night. Nothing serious, just a few on my arms, legs and belly. My hives do get slightly worse with stress and I also have pressure hives. None of my drs have suggested anitdepressants. You just have to find the right regimen for you. Not sure what you have tried in the past. Allegra 180 2xday and Zantac 300 2xday and Singulair 1xday and colchicine .06 1xday are keeping mine under control. It took me years to find the right regimen. Adding some then stopping. The colchicine is really working for me. I am so glad it is, the dr was talking about an immonusuppresant if that didn't help. I really didn't want that.
    Have you been diagnosed with any immune diorders? Has your daughter been diagnosed with any?
    • CommentAuthordeserae
    • CommentTimeJan 27th 2010
     # 41Report Post
    Yes, the enbrel is injectible, and I take it twice a week. It was hard, but I got used to it...

    Penney,
    You should go see a dermatologist and see if you might be a candidate for immune supressant therapy. That is the only thing that worked for my hives. I never responded to antihistamines at all. It is really frustrating, but stick with it, and see a few different doctors if yours doesn't seem to listen to you. My hives aren't caused by anything either. They just appear of their own accord. I have tried several immune suppressant drugs, and with each one my symptoms have been improving. It is worth looking into at least. I have tried: cyclosporine, cellcept, methotrexate, and enbrel. (They worked better for me in that order, but each person is different). Good luck with your treatment!
    • CommentAuthorPenney
    • CommentTimeJan 28th 2010
     # 42Report Post
    A dermatologist is the only type of doctor that I have'nt seen. Maybe I should try this next. I have already been to the medical college for asthma and imunology and been tested with no real results. After the four hour drive to get there they told me they would'nt test me because I was'nt well enough.You see this affects my breathing and my oxygen level was low. After begging they finally did the test and also I participated in an experimental test,all were inconclusive. All of my bloodwork shows me as being healthy unless I'm on prednisone when its done. I'm on Zertec,Zantac,Singular,Nexium and asthma meds as well as the Epi Pen just in case. I wake up with hives everyday to some degree but has been a while since has been really bad. It has covered my entire body and I know it's not only topical because I can feel it inside. After reading some of the posts here I know some of you know exactly what I mean. I feel a new found hope since there are others with the same symptoms. After many doctors and much expense I had truely given up. It's very hard for others to understand it does'nt only itch but affects your energy level and many other things. Wish you all well and pray for an answer to all this.
  43.  # 43Report Post
    I prepared, hand pumped drumed AGENT ORANGE herbicides into a 750 gallon trailer and mixed with diesel fuel, hand poured 50 lb bags of MONSANTO AGENT BLUE AND AGENT WHITE INTO THE SAME 750 gallon trailer which was an old oil and adi trailer and mixed with deminerlized water or regular hydrant water and heavy oil and JP4 ON ANDERSEN AFB GUAM AND OFF BASE GUAM WHICH I HAND SPRAYED from the trailer with a motorized pump and 50 ft hose with a wand spray nozzle. I had to wear a black rubber apron, plastic face shield, black rubber gloves to my elbows, rubber boots over my combat boots and sprayed these herbicides all over THE AIR BASE ON SECURITY FENCES, FUEL PUMP HOUSES, FUEL TANK FARMS AND FUEL PIPELINES. I developed chloracne, sterililty, autoimmune problems with severe hives and anaphalactic shock air way closure which to this day flares up on me, severe anklylosing spondiolitis, severe spinal stenosis, peripheral neuropathy, sciatica, edema, swollen hands and fingers and feet and legs, psoriasis on my scalp and ears, severe ischemic heart disease with emergency open heart surgery at hamot medical center sept 27 and 28 1995 in erie pa and death during the surgery with ruptured aorta and lad with arteries of that of a man 150 yrs old. severe scarring in my eyes from strokes and heart attacks from 1988 to 1995. I hand sprayed agent orange on guam from sept 1968 to june 1978. I know that AUTOIMMUNE DISEASE MCTD IS THE MAIN CAUSE OF ALL OF THE DISEASES OF AGENT ORANGE WHICH ARE PRESUMPTIVE NOW BUT ALSO MANY, MANY MORE NOT ACKNOWLEDGED BY THE VA OR DOD OR CONGRESS. I KNOW ALL READERS WHO READ THIS TO TAKE HEED THAT IF YOU ARE A VETERAN OR CHILD OR GRANDCHILD OR A VET EXPOSED TO AGENT ORANGE TAKE WARNING OF THIS AND BE TREATED FOR AUTOIMMUNE DISEASE AND BIRTH DEFECTS.

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