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  • Negative tests and prescribed plaquenil

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    Old 03-20-2013, 12:50 PM   #1
    marymk
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    Negative tests and prescribed plaquenil

    OK - I finally got to a Rheumy and here's the deal - I started with a malar rash back in August and have had continiuing skin problems ever since - moslty on my face,neck,and ears.
    Went to GP 4 times between Sept and December - 2 rounds of Prednisone cleared it up, but quickly came back when stopped. Went to a Derm and Allergist during that time also. All tests were normal - blood counts, liver function,no allergies, RA and ANA - negative. The only thing I had was an eleveated ESR rate. This is what got me a referral to the Rhumetologist - along with extreme fatigue and stiffness in hands and wrists mostly.

    I could had taken Ibprohen for the joint aches - it wasn't unbearable, but the skin issues were awful, and I had to see another doctor.

    He retested all the autoimmune markers (some I didn't have done before),CBC also, and found only the ESR elevated.
    He's calling it sero-negative Rheumatiod arthritis - and prescribed plaquenil. I asked him - what about my rash - he sort of non-answered - like he didn't know what to say about it.

    I only just started the plaq, but I have heard that if you have a Lupus rash, that this drug should help - so I'm wondering - what do I have going on. I do have a strong family history of arthiritis, and other autoimmune issues.

    maryk

     
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    Old 03-21-2013, 03:54 AM   #2
    VeeJ
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    Re: Negative tests and prescribed plaquenil

    Maryk, hi. Sorry for your problems, not fun!

    Have you seen the sticky posts (permanent info posts) above the user threads? There's one on skin problems in lupus: some are lupus-specific, others aren't. I'm curious what your face/neck/ear problems look & feel like. Do they itch, scar or depigment? Get worse or better after sun? (Etc.)

    There are also stickies on how lupus is diagnosed, etc.

    Back to skin... Discoid lupus lesions tend to scar &/or depigment. People who *present* with discoids only very rarely progress to full-blown systemic lupus. These patients are sero-negative, meaning don't have circulating autoantibodies in blood labs. This subset is called cutaneous-only or skin-only, but I think pain and fatigue are possible. While it's mild (as lupus goes), this subset can be cosmetically disfiguring.

    In contrast, people with systemic lupus typically have circulating autoantibodies. Problem here is that antibodies can rise and fall as flares come & go, so trapping them on labs can take awhile.

    Re: sero-negative RA, did your dr. discuss its characteristics? Did he do X-rays to look for erosive "mouse bites" that can be seen in RA?

    I think ESR is a very general marker & can elevate simply due to, say, infection.

    Maybe the moral here is a diagnosis can't always be made "for sure" from a single set of labs, or after seeing one rheumatologist and/or dermatologist. If I were you, I'd want my skin rash reviewed for at least three reasons: to double-check the Dx of sero-negative arthritis, to make sure the best meds are being prescribed (there may be add'l meds available if your lesions are really lupus), and to know if UV (sun/tanning parlors) must be avoided.

    But even people with an AI can get all sorts of skin problems. Say yours itches/weeps and looks brown & crusty: I'd wonder about seborrhea. (A woman I know with lupus used to get it so badly on her ears and face that she needed IV steroids for weeks to clear it up.)

    Sometime we have to try again. I saw 8 (!) dermatologists before going to a teaching hospital where 2 doctors zero'ed in fast. A thought: if there are lupus support groups in your area, perhaps someone there could give you names of dermatologists. My theory would be if a doctor knows lupus rashes, he/she is probably pretty good & worth a try.

    I'm not saying this is lupus or that it isn't sero-negative RA, btw---I couldn't know. But finding a better dermatologist would be one of my goals. Anyway, I hope something above helps you with your thinking & that you post again soon. Hang in there! Warm wishes, Vee

    P.S. Plaquenil helped my skin rash, fatigue, pain, migraines, anemia, etc. But I also must avoid sun, and wear sunblock & protective clothing. Plaquenil can take 3-6 months to reach its full effect, but partial relief can certainly be felt sooner than that.

    Last edited by VeeJ; 03-21-2013 at 03:56 AM. Reason: typo

     
    Old 03-21-2013, 09:35 AM   #3
    marymk
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    Re: Negative tests and prescribed plaquenil

    Veej,
    Thanks for the reply - I remember you replied to an earlier post when I was still trying to get to a rhuemy.
    I know the ESR is very general, but that's all they could find in all by bloodwork - and they many tests over the last 6 months - some tests twice.

    My rash seems to go thru different stages. The first occurance was in the summer - on vacation - so out in the sun everyday - and it looked to me like the butterfly rash. It didn't itch - but was very pronounced - and I didn't have any sunburn/redness anywhere else on my body, or I may have thought it was typical sunburn - it didn't peel lke sunburn - it just faded after about 10 days.
    Then 1 month later - it can back- but then it seemed to burn/itch - not sure how to explain it - I was also back at work - so not in the sun quite as often.

    As the weeks progressed I had it on my ears,forhead a little and then it progressed to my neck.It seemed to move around the whole area.
    I also developed very itchy dry eyes - have always had dry mouth and nose, so they tested for sjorens - came up negative - that's what I thought I really had - and think I may turn positive for that someday - I can't live without nose drops - the pain litterally wakes me up at night often.

    I never blistered or looked like hives or oozed anything - just sort of look red -although I did get a couple of marks - nothing drastic.

    I think I mentioned having allergy tests from an allergist, and skin patch testing from the dermatologist. The only thing they found was that I am allergic to Gold - go figure - I didn't react at the site of my jewlery, but I don't wear alot of it and my other doctors doubted that this was causing my skin issues. I call then skin issues, because they just don't act like what I would call a rash.

    I have a followup with the derm is a few weeks, so maybe I can get a biopsy if I have something at the time. It seems to be calming down a bit this week.

    Maryk

     
    Old 03-21-2013, 12:44 PM   #4
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    Re: Negative tests and prescribed plaquenil

    Hi. Let us know how it goes with the dermatologist next week.

    I think I've read that malar rashes can go more widespread, but this feels like one of those things that has multiple possibilities.

    Are you on any meds? My dad didn't believe us when we warned him sun didn't mix with his new BP med---picture a lobster. I've seen the same reaction to sun in people taking antibiotics. You've probably already considered skin care & makeup products.

    If I see anything that you might turn into questions, I'll post again. I hope others can add more. Good luck, Vee

     
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