I was put on a new medication for my blood pressure, and what a bad reaction I had with my skin, (hives, itching,rashing). I have been tested 3 three times in the past for Lupus, and all came out negative. I actually want to be tested again. The sun literally hurts my arms, and makes my face itch too. The pain will keep me up ALL night long. The dermie wants me to keep taking Zyrtec during the day, and Benadryl at night. It doesn't do a thing for me except make me woozy. I had JRA, some hairloss, one miscarriage, been anemic, and also had a blood clot in one of my retinas to list a few things of my med history. I need some relief, sleep, and answers, but the dermies treat me like I am a hypochondriac, even though the rashes ARE visible. Please help me. What should I do for relief?
hi pw1958 first off ***BIG HUG***
you are not a hypochondriac ... please don't feel like one! whatever it is, it sounds like something is going on. even with a dx i sometimes feel like a hypochondriac
have you considered asking your primary to run blood tests for you ... he should be able to *flag* anything unusual but ask for your own copies!
just to note that according to Dr Daniel Wallace author of 'The Lupus Book' there is also a small % (3-5% i think) of lupians that continue to *test* negative ANA and dsDNA but are still lupus positive! he has a section on this!
the blood tests are not the sole criteria to dx lupus and by no means the only criteria, symptoms are a major factor ... in other words you need to meet at least 4 of the 11 criteria and not at the same time, once you meet that criteria consider it *checked off in indelible ink*
have you read the stickies (permanent threads) at the top of the list? if you feel *they are missing it* then ask your primary for a referal to a rheumatologist, dermatologist/dermaopthamologist (hope i got that right)
sunscreen, limited sun exposure - these good practices cannot hurt anyone!
Don't let up until all your questions are answered and the investigations that need to be done is getting done!
Keep us posted!
Thanks so much for the help! My dermie is at a loss. He saw the rash on my neck and chest, and responded to my questions of what was wrong with me with, "I've never seen anything like this before!"He wasn't sure if my photosensitivity was brought on by my new med that I took for four days,or what. I think that I WILL DEFINITLEY take your advice and ask my doctor to do further testing. I did see the sticky posts about Lupus, and yes, I have had at least four if not more symptoms. These doctors in my area really do not care about their patients. The last rheumie I had was "mad" that he couldn't pinpoint what was going on with me physically... Since then I was diagnosed with fibromyalgia, and also have had bouts with unexplainable sore throats that come back negative for strep. I am so sick of these rashes and feeling like an abnormal freak. Thanks again for your kindness!
pw1958, hi & welcome! Your post caught my attention, as I also had skin & various other problems for years. I'll do my "skin story" first...
I had years of recurrent annular (targetlike) nonscarrig, nondepigmenting lesions on upper arms & torso. I finally [duh! ] realized sun had to be the trigger, as time elapsed between sun & rash emergence kept shrinking. So I told my dermies (6 or more) this, my GP, my gastro, my urologist, ETC. In addition to the skin rashes, I also had severe GI problems, urinary misery, headaches, hair loss, joint pain, pain along long bones (shins & arms), weight loss, migraines, B-12 anemia, etc.
I had two deep-punch biopsies done locally, but STILL no answers. ("Rash of unknown etiology" one read. ) Finally I took myself to a *teaching hospital* rheumie who also sent me to a dermatopathologist (= dermie who does the pathology---the labwork---himself). BINGO! I learned that special "immunofluorescent stain tests" light up in a way characteristic to lupus, IF the rash is truly a lupus rash. My rash was quickly Dx'ed as SCLE annular form (annular = targetlike, and SCLE = subacute cutaneous lupus erythematosus.)
For the record, there's a 2nd kind of SCLE rash called "psoriasiform", that looks somewhat like psoriasis but ISN'T. And there are OTHER lupus rashes as well: bullous (blistery), tumid, etc. i.e., we always read about discoid & malar, but there are MORE!
My "bloodwork story" was even more uncommon. The rheumie explained that people with "my" rash very often test positive for anti-Ro; however, about 1/3of this subgroup remain ANA-negative. BINGO again! My overall Dx was "Ro-lupus", that rare category Angel mentioned, that accounts for only 3-5% of systemic lupus.
Also, in his hardcover, Dr. Wallace writes about *other* skin problems lupus patients get more frequently than the general population. There's even something called "lupus urticaria" (urticaria = hives)---Dr. Daniel Wallace discusses it. (Most libraries have his hardcover.)
Your history of JRA also caught my eye. My childhood & adolescence were peppered with episodes of severe pain, with pneomonia, with high fevers & convulsions when I was given heavy antibiotics, etc. My current rheumie was the ONLY dr. who looked WAY back at my lifelong history. He also asked if I'd ever read the "alternative criteria" for lupus. FYI, those criteria are right here, as a sticky post at the top of the thread list.
Also, there are some drugs that trigger lupus. And there are other drugs that trigger a lesser form known as DILE = drug-induced lupus. I think some BP meds are known culprits. Dr. Wallace covers these subjects, too. (He covers a lot! Great and useful book!)
Bottom line? I'm obviously merely a DUMB PATIENT, so please take what I write in this light. If your dermie & rheumie can't figure it out, maybe they can help you find a "super-specialist", like a dermatopathologist or a teaching hospital dermie or rheumie, who CAN? You must be terribly frustrated, but keep at it, OK? Post more when you have time. Meanwhile, sending you my best wishes, sympathetically, Vee
I don't know what I'd do without this message board. Thanks so much for the guidance,understanding, and help. Unfortunately ,I have to bug you with another question...There is another rash that has been brewing in the upper part of my thighs,close to my groin area. I didn't have the dermie check it out because I was embarrassed enough yesterday. If it gets worse, should I call the dermies office ans ask for a biopsy? Will it make a differece in the test results since I was put on Prednisone yesterday?? Please help! I am going to pick up the book by Dr. Wallace today. There is nothing like being informed and educated! Thanks again for all your kindness!
I wanted to give you this quick update. I am going in this afternoon for a biopsy on my rash, and I was put on Prednisone this past Monday.. What I was wondering was if the Prednisone might impare the test results for the biopsy? I am sooooo itchy and miserable. I started to notice the rash on my face, especially after being outside for even a brief period of time. If I don't get anywhere with this biopsy, I am ready to go to Boston, or East Oshcosh an answer. Sorry I am sounding sooooo miserable. Back to feeling like a mental case.
How much prednisone are you taking? It took 20mg to stop my itching. The only thing I found helped was a really hot shower. I don't associate my rash with the itching. The itching is way below the skin....no amount of scratching will make it go away. Doc says the skin (an organ) is inflammed.
PW, re: what Heidi related about her last 2 samples being sent to a NYC lab. That's where I got my skin answers, too. The dermatopathologist I saw had my old skin punches sent to him from labs who'd done biopsies previously. (Labs are required to keep samples for some years. WHO KNEW? ) He retested the old punches as well as testing the new one, and also did immunofluorescent stain tests on all of them. It was like watching a cold case detective at work! I really hope you learn something useful from this biopsy. But if you don't, know that there are some surprising techniques & approaches out there. Bye for now, Vee
I went to the dermie last week hoping to get the biopsy done, but it seems that the Prednisone could alter the test.... What a waste of time that was. They now want me to go to the Rheumie again, and start getting help throught the rhemie instead.The dermie told me that there could be a long time before I would know anything/"or" the right test would be done at the right time & I would have an answer. Can anything be done without a rash present? I am soooo fed up. I have been going through sooo much for three years now. Sorry about the complaining.These doctors really don't care about their patients out here. A friend of mine is going to give me a name and number to a rheumie out in Boston that she goes to. Wish me luck! Thanks for lending an ear!