Chronic Uritcaria and Angioedema / Autoimmune???
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I have been diagnosed with this and am now in my 10th straight week of this. It started out of nowhere and I thought it was an allergic reaction as hives were all over my hands, feet, chest, face, arms, mouth and then my throat closed up and was seen in the emergency room for anaphalactic shock and given high doses of Benedryl for H1, Zantac for H2 and steroids to get rid of the symptoms. The bendryl and zantac have done nothing to stop the attacks, so GP tried hydroxine which also didn't work. The only thing that seems to stop the symptoms is steroids. I am now taking a steroid injection every 8-9 hours to stop the symptoms as the prednisone tablets made me so nauseous I could not keep them done. This works well, but have gained 30 lbs in 6 weeks and the skin on my face and chest is one constant pimple like eruption. I have seen an allergist who did a whole battery of tests for allergies, etc. Everything was negative except my IGg antibodies which were very high. I am coming to the conclusion that this has nothing to do with allergies, etc. I believe that this is due to an autoimmune disorder. I was diagnosed last july 2006 with Multiple Sclerosis and I believe this is part of it. The allergist put me on Doxepin 150mg every night with Fexofenadyne 180mg every evening and every morning, but this has done nothing to help. Again, only the steroids relieve the symptoms but cause a host of other problems and you cannot be on them indefinately. I see my GP again this week and I believe the next step is to try immunosupressive drugs or Iv immunoglobin therapy. There has been success I heard of with these therepies, so I'm crossing my fingers. For all of you out there suffering from this debilitating disease I feel for you. This has been so depressing and frustrating for me as no one seems to really understand the problem. I do know that if you are suffering, you need to be your own researcher and doctor on this. Push for testing of everything and don't let them tell you that you just have to wait it out. Have your doctor test your thyroid because apparently this is the problem over 50% of the time, My thyroid is just fine, so I continue to look for the problem. Thankfully, my doctor is very understanding and doing everything he can to help. I live in the US, and the posts from everyone in the UK that is having to wait months to see a specialist shock me. I feel for you all. If anyone has any information regarding an autoimmune reaction or any treatments besides steroids that have actually dealt with the problem and not just the symptoms, please let me know. If anyone would like more information I found a website with a detailed article regarding treatments at medline.com then type in chronic urticaria and angioedema. Also, feel free to request my email from the moderator. Good luck to everyone out there, it is encouraging to know that I'm not the only one dealing with this.
0 likes, 3 replies
TMR
Posted
You are correct in thinking that the fact you already have one auto-innume disease (MS) may be one reason you got urticaria. I too have MS and have been researching AI disease. I was astonished to discover how very comon it is for people to have more tha one AI disease at a time, and this is confirmed by my consultant. I myself have three. Four years ago I had an acute allergic skin reaction to something and was giiven a short course of steroids. They did the trick, but have left me with chronic candida (thrush) which I can't shift. You definitely need to get off them if you can.
My hiusband has suffered from chronic urticaria for 40 years, ever since he was 16. For years he controlled it with anti histamines, bu as he got older they were less effective. A dermatologist at the local hospital suggested a diet which avoids salicylates and histamine-inducing foods.It's very resrictive and you can't go on it for too long, but it does calm down the symptoms. After a month or so you can try reintroducing some of these foods one at a time and see if you get a reaction. He combines the diet with homeopathic medicine, which worked brilliantly at first, but has not been as successful with his latest bout, which was stress-induced. You can get details of the diet from the website of the Chronic Urticaria Society (www.urticaria.thunderworksinc.com)
If you decide to try the diet, which tends to be the opposite of the diet recommended for people with MS, it would be helpful to consult a naturopath or nutritionist. They often recommend vitamins and minerals to boost the immune system too.
Good luck.
lesley.smith
Posted
l.s
keshiyena Guest
Posted
I see this was over a year ago, just wondering if there's an update. I've been dealing with the same issues for over 3 years now. Was diagnosed with relapsing remitting MS in 2011 after experiencing "the hug" and numbness and tingling in my fingertips, which hasn't stopped probably due to demyelination, while everything else went away.
Around 2012 began Copaxone injections. Within several months, began getting terrible hives and swelling everywhere. Sometimes spots, other times severe swelling of hands, lips, eyes, etc. the only thing that works to relieve the issue for me is low doses of steroids--10mg pills that I adjust my dose depending on the severity, which I keep with me at all times. I stopped the Copaxone although my neuro at the time claimed there was no link and was convinced it was my diet, which hadn't changed (blame the patient). It's been very frustrating, I've been through all the tests and nothing. After researching online, I'm convinced this is an autoimmune issue and I really think Copaxone started up whatever this is. Prior, if I had an allergic reaction to something, it was immediate, it was treated easily with Benadryl, and it went away. Now, that doesn't work, the hives and swelling seem to come out of nowhere most often, but I do find it can be exacerbated by dehydration, or sun and heat exposure, but not always. It's frustrating being told, "heat sensitivity is part of MS," when everything seems to be part of it and I didn't have these issues prior to the drug.
My my current neuro says there's no connection between MS and skin disorders, but I'm starting to question that as I've not experienced a relapse/remittance, I'm not even sure what that looks like for me since some MS symptoms are so elusive and vary by patient, as I only had the initial incident, but the hives and angiodema have persisted and I'm very wary of starting any new treatment despite neuros warning about decline-what if it doesn't? They can't answer that. Again, I don't think it's just a surface skin issue, or something in the gut, or toxins, I think it's deeper than that.
What at I know at this point is that I had about an 8 month stretch with no issues, then I had a medical procedure related to fibroids and now the hives and swelling are back.
I continue to look for others with these issues to compare notes.