Does anyone on this board have this? My son was dx with it in June '07 after 5 months of symptoms starting, worsening. He has only twice had them under complete control, both times lasting only very briefly (no more than two weeks). He takes a combo of Allegra 60mg, Singulair 10mg, and Zyrtec 10mg to keep them 'mostly controlled'. He still gets itchy ranging from mild to severe and still gets hives ranging from just a few to a major breakout, but not often thankfully. In the past he would break out so fully head-to-toe that he'd look like a giant hive with them all melding together. They tend to come out when his heart rate accelerates/blood pressure rises due to physical or emotional exertion, sustained (even sustained time playing video games can bring them on b/c he gets so "into" it). Less often the heat can bring them on as well. He is not very active anymore as he is disabled (can't walk long/far or be active for long) so that as a hives-trigger is not a big problem, but I'd still prefer that he had them fully controlled. When he does break out, he just has to rest to get them to go away, but sometimes it can take hours to do so. What meds have worked to keep others autoimmune hives under full control (or has anyone had them fully controlled)? For anyone who takes 'heavy duty' meds to control them, have you had any averse side effects of long-term use of the stronger meds? Our son also has other medical issues that make us leery of the super heavy-duty meds b/c of that concern. It will be 2 yrs this January since his first symptoms began and I think that's a long time to have it managed only in part, even if his activity level doesn't provide a lot of opportunities for outbreaks.
Hello. Its been sometime since I posted to these boards. I saw your post and it really interested me. I have a dx of Autoimmune Hepatitis which apparently I have had since I was around 32 years old, maybe longer. Autoimmune Diseases run in our family. I have an 18 year old daughter that has Uticaria. The backs of her legs, where they bend and the bend of her elbows on the inside break out frequently and they itch too. I took her to a dermatologist who told me that she had "Water Uticaria" when she takes a bath or does dishes the warm water seems to aggravate the symptoms and causes her to break out. After having read your post, Im inclined to think hers may be Autoimmune Related as well. She is married and has a 5 month old baby girl, who also breaks out when she is mad or angry. We took her for an Eye Exam and they had to dialate her eyes and she got so mad and screamed so hard that she broke out into what looked like hives all over her little head,face and neck! My daughter doesnt take any meds for it other than some sort of topical cream the doc prescribes for her. Hope this helps.
Hi. I'm no Dr but I've had chronic hives for 14 months straight before then they went away on their own. The Dr's weren't much help in identifying the cause so I eventually just gave up and focused on antihistamines for the symptoms. The combo that worked best for me was 10mg Zyrtec (2x/day), and 50mg hydroxizine (3x/day). However, it took me a long time to build up immunity against the sedation side affect of hydroxizine. No side affect for the Zyrtec. The singulair and allegra didn't help me much but the Dr's say everyone is different. I've recently broken out again and I'm going to ask my Dr about a new drug called plaquenil that supposedly helps supress chronic hives. I hope this helps. Oh yea, no hot bathes either. The heat makes the hives more itchy. Lukewarm at most.
Hi, I just read your post about what your son has, and it sounds almost exact to what I have. I didn't know what it was until last summer, they diagnosed me or whatever it's called. I was getting constant hives, head to toe, and sometimes swelling in my face. I'm also allergic to a long list of other things but even when eliminated it kept happening. They started me on allergy shots a year and a half ago, and i'm on 4 prescriptions to four the hives and allergies. They've been working since they got this regiment together and as long as i take them consistently i'm fine here what they are, keep in mind I don't know much, i'm only 19 but you could talk to his doctor about it: hydroxyzine 10 mg. 3 a day, ranitidine 150 mg once a day, xyzal 5 mg once a day, and singular 10 mg. once a day. Hope this helps!
Thanks to everyone who responded. My son recently dropped his Singulair and his Allergist has him taking Pepcid with his Allegra and Zyrtec to see if it helps (Pepcid isn't just for GERD, also works as an antihistamine -but my son also has GERD,so double-duty is good). The Allergist wants to try Xyzol when we use up our current supply of Zyrtec. He said it's a derivative of it, but is suppose to be better, so good, it may be able to replace both Zyrtec and Allegra (and pepcid if we don't want to use if for the gerd, too). If it's not working alone for someone else with autoimmune hives, I'm wondering why my son's doc thinks it would for him. I will ask about the hydroxyzine, too, though, and planquenil (never heard of that one before). He's never used it before. It sounds like the ranitidine is like pepcid and does double-duty, so I'll ask my son's Allergist which works better or if there is a difference. My son is 14. He takes over medication for his other medical conditions, so some of the meds may not be prescribed for him b/c of those, but I'm going to ask his doc about all of them -and why they may or may not work for my son. Thanks!
btw, do all of you with autoimmune hives also have other autoimmune disorders? My son has inflammatory bowel disease, autoimmune liver disease, gerd, and arthritis-like pain that's really a secondary symptoms of his IBD but kind of counts as another autoimmune issue.
I don't know about the rest of you but mine was strictly the hives, no other problems. I have never even had allergy problems to speak of, which is what has had me so confused as to what this was. I'm continually on a high dosage of anti-histamines to treat the hives. I'm just treating the symptoms and hoping that they eventually go away again, like they have done in the past. I hope everything works out well for you and your son.
I began having hives about 8 years ago. First sporadic, maybe a couple times a year. They got more frequent and I couldn't find a trigger. Massive allergy testing revealed nothing new (mushroom allergy that I already knew I had). Finally, a couple years ago I was told that it was autoimmune. The immunologist said that they rarely see this in people over the age of 50, so it would likely burn itself out (in 10 more years). ...but I kept getting sicker. I began having what seemed like allergic reactions to EVERYTHING I ate. Antihistamines helped in the beginning, but became less effective over time. I even tried Doxepin which is something like 100 plus times stronger than Benadryl. It's used at higher doses as an antidepressant, but is apparently the strongest antihistamine out there. Then I was diagnosed with CVID in August. Once I began receiving IgG antibody infusions (IVIG) the hives completely stopped and most of the food reactions have also stopped. After doing a lot of research online, I found another documented case of CVID first presenting with autoimmune hives and they cited 5 or 6 other cases. Like me, this boy's hives stopped when he started IVIG. I was also told that autoimmune hives has been linked to autoimmune thyroid disorders and people with auto. hives should be routinely checked for thyroid issues. Now of course CVID has a high incidence of autoimmune diseases of all types.
I believe that Atarax (hydroxizine), Zyrtec and Xyzal all have similar basic ingredients. Atarax is said to be the most sedating, but all three of these made me so wired I couldn't sleep. I tolerated Zyrtec the best and it 'helped' working for maybe 4 hours at a time, but couldn't stop them. Nothing, I tried was any more effective than a Benadryl and Pepcid combination, except Prednisone, which did work, but Prednisone has it's own major complications long-term and I didn't know I had an immune deficiency while I was on it.
I first want to thank you all for posting your experiences. My personal expericence with hives has been very limited until Nov. 2008 when I first experienced them. The only allergies I had in the past were typical seasonal allergies. I treated the hives with zyrtec, which helped for a while. In Feb. 2009 I finally went to an allergist who did every blood work up under the sun and finally dx me with autoimmune urticaria (hives). I am currently treating the symptoms with pepcid and Allegra once a day in combination and doxepin in the evening. This seems to be working, but unfortunately my hives will not completely go away. My questions to you all is: Did anyone get a second opinion from another allergist or any other doctor or ND (docotor of naturopathy). I just wonder whether it is worth my time and money (my insurance company may not want to pay) to seek another opinion or route of diagnosis and treatment? Thank you for advice.
When I was at the Mayo Clinic they referred me to an Alternative Medicine doctor on staff...kinda surprised me they had one...his suggestions were more about dealing with the stress of an illness than directly stopping the symptoms, but it was helpful to speak with him.
Extensive allergy testing only showed I wasn't allergic to anything, no hay fever, no foods (except mushrooms which I already knew). Yet, I can tell you every time grass or mold is high. My sinuses swell shut, eyes itch...etc.
I've only had one outbreak of hives (just recently) that lasted 2 days (came on the same time as a sore throat) since I've been receiving IVIG for CVID. The allergist/immunologist that diagnosed mine said any illness has the potential to set off the autoimmune hives. Is it possible you have an underlying chronic infection? When my hives first started I was also having some sporadic discharge from my tonsils...other than that I didn't seem to have an infection, but my tonsils have gone back to normal now also.
I thought that I may have an underlying infection. My allergist had my blood tested for strep, mono, thyroid, and many other test(they took 7 vials of blood). The tests showed that I was negative for infections, and it showed that my CU index (Functional Antibodies against Mast Cell Fce Receptor) was Positive >50 (normal <10). I feel like I do not need to go for a second opinion when this test clearly indicates auto antibodies are causing the hives. Some family members do not agree with me and think I need to seek a second opinion. As far as illness and its effect on my hives, it is similar to your experience in that it made my face swell to where I did not look like me. That to me is the worst part. I can handle the worst case of hives as long as it does not get on my face. You mention receiving IVIG for CVID. What is that?
Last edited by iitchyman; 04-30-2009 at 06:30 AM.
Reason: poor grammar
CVID (Common Variable Immunodeficiency Disorder) is a primary immune deficiency. For me, I'm low on IgG antibodies-the most abundant type you have (This is specifically called Hypogammaglobulemia). The IVIG is IgG antibodies given intravenously. I get this once a month. CVID symptoms can include repeated and prolonged infections, digestive disorders and autoimmune disease. My symptoms were somewhat atypical for years, which is likely why no one even thought to look for it until recently. My autoimmune hives seem to be a consequence of the CVID. It's an uncommon autoimmune response to CVID, but has been documented in a few people as the first presenting symptom. My immune system went pretty haywire. I couldn't eat (anything) without systemic reactions that seemed like allergic reactions, but I kept testing negative for food allergies. The IVIG infusions have stabilized these food responses and the hives.
I have had hives for the past 14 months too, since Feb 2008. They are so irritating and I went to an allergy clinic, rheumatologist, and regular doctors and NO ONE can figure it out. Just about 2 or 3 weeks ago I began taking antidepressants but that is not working either. They happen every day mostly on my arms where there is little tissue or fat, and on my shins, my belly and in my face tissues. Oh and the back of my skull. Anyways, I just wondered if anyone had this problem too and figured out what to do about it. Thanks
Thanks for sharing your experience. Do you mind telling us what the Specialist's name is and more importantly....how much does the Cyclosporine cost? If it is expensive and you were able to get your insurance to pay; how long did that take and what advice would you recommend to the others in this group to make the insurance pay for our relief?
I don’t know what is proper etiquette or protocol in naming names * I HAVE CHANGED PROFILE TO ACCEPT MESSAGES AND WILL REPLY*
ZyFlow which he first tried was expensive and insurance paid some but not all so I was left with $100.00 plus bill. Supposedly ZyFlow works usually on men versus women but nothing changed for me. He then moved to Cyclosporine which is a pretty generic drug and my BC/BS insurance made me pay $10.00. Without insurance a 90 day supply would again be well over $100.00.
Forgive me I can’t remember the details now since I been on this now for 6 months and I am living a normal life. I Thought I would wait out some time before over reacting with a positive post, just to fall back into the Hives routine.
Once I took Cyclosporine the positive impact was about three days. Again hard to say since they had me on Prednisone, which knocks down the hives, but long term Prednisone will have major side affects on you. I was on this for like 6 weeks and the restless nights and irritability for the steroid based drug, was starting to way on me.
I was basically incapacitated with these hives. Every 5 days or so the Angioedema would occur, Parts of me would get these deeps or buried hives with swelling. I had to worry where it would break out and if the swelling would come. Please write me and I will direct any and all to my specialist. I still can’t believe I had four others docs who tried to tell me I was allergic to something….
Last edited by Slawer; 06-30-2009 at 07:19 PM.
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