I was wondering if there was anyone else out there who suffers with chronic hives and is a lupus suffer. I have new rheum doc and he seems to be questioning my lupus in general. It has been at least 20 years since diagnosis so I am very confused at the moment. In the 20 years I have had only one major flair so maybe that is why he is questioning it. If I don't have lupus then what do I have???? Very Very Confused!!!!!
TigerPaw, I've read about "lupus uriticaria". But I imagine the question would be, How does a doctor distinguish between lupus uritcaria and run-of-the-mill urticaria?
Did you keep anything (labs, etc.) showing what your doctor twenty years ago based his/her Dx on?
Have you been on lupus meds all along? If YES, I'd ask if that's why your labs don't suggest LUPUS. The meds are SUPPOSED to quell the unwanted autoantibodies seen in lupus, right?
If I had chronic hives, I'd look for a TOP dermatologist or dermatopathologist ( = dermatologist + pathologist, meaning a dermie who does own labwork).
I had an eye-opening experience with a dermatopathologist. After seeing many dermies for my rashes, I was referred to a dermatopathologist affiliated with a metro teaching hospital. Sure, he did the usual deep-punch biopsy, BUT he also did immunofluorescent stain tests, which I'd never had done. The stain tests revealed the strange lines seen in lupus patients. POINT being, you may need someone very sophisticated!
Let us know what happens next, OK? Meanwhile, best wishes, sincerely, Vee
Thanks for your reply Vee, It helped a lot. Now I don't feel like I am that strange. It was just such a shock after all these years to be told the hives and lupus were not connected. I am suppose to see a derm Dr. sometime in the future,it has been suggested I try a endroconologist so will see if my gp will send me.
I am very lucky to not be on any meds for lupus at the moment. I was taken off because of deafness years ago,the hope was my hearing would come back. It didn't.
I was really starting to self-doubt myself and your message helped. Now I feel there might be some help out there somewhere.
TigerPaw, with ups & downs from childhood, much self-doubt, and a long progression of snarky and unhelpful doctors, I felt HELPLESS at many times. But honestly, I may have been someone who evolved very slowly towards a Dx. And I was a low-odds diagnosis (Ro-lupus). And maybe my doctors were substandard, where lupus & its many weird variants are concerned. Actually, I think all the above were factors!
You've been miserable with hives & other problems for several decades, right? So I really hope you can try other doctors. Most of all, never ever quit! Stay in touch. With big hugs, Vee
hi just new in had lupus all life but last year started with bad case of urticaria face looked like id had a stroke so now on a salicylate free elimination diet to try and see what is causing these flares, i like you have managed to keep in check severe flares by being very vigilant to symptons and very carefull of what i eat, so gutted with this docs dont know it all and i always stand my ground, the best bit of info i ever had from the doc who was with me while trying to find answers 25 yrs ago was to always note down the really bad episodes and always highlight these when seeing rheumie. i know my doc was popoing me when i asked for the alternative to aspirin and he said there were no salicylates in food but so far i am proving him wrong so trust your own judgement it is your body your illness
Thanks for your reply.
I see a derm this week so have stopped the meds that supress the hives. Only taking something for the itch. I am hoping this way he will see what I am dealing with.I just hope there is some kind of solution and if it is not lupus related then I hope they find out just what it is.It has now been six months and I am tired of it. Last time it was a year and a half before they went away.
I had to go back and search (luckily I kept the newspaper clipping from a month ago) and found a similar story. Briefly, for chronic hives try Vit C 500 mg twice a day (you can use buffered Vit C or Sodium Ascorbate.) Many people responded to the column stating it worked! So I thought I would pass it along to you. Don't know why it works, but it is cheap and worth a try.
A number of years ago I had 'cold' urticaria for all winter long. Only had it the one time. Don't know if it was related to my underlying autoimmune issues or not.
Just an update concerning my chronic hives. I have seen the derm and had lots of tests run. Everything came back fine so the conclusion was my lupus is causing my chronic hives. Duh!!!,I knew that!!!
Anyway I am on Aerius now and as long as I take it I am not too bad.
I just wish I knew when my face is going to swell,I have an awards dinner tonight and am receiving one but nervous about going. Oh well will have to wait until the last minte before I decide.
Thanks again for all the suggestions and helpful hints!!