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    Old 10-11-2008, 04:59 PM   #1
    pw1958
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    I could use some guidance PLEASE!!!!

    I was diagnosed with Juvenile Rhematoid Arthritis at age ten, and grew up to having all kinds of health issues from pleuresy to now having a heart valve problem. When I get upset, my neck chest, and scalp breakout with a terribly ichy rash. About two years ago I went from having great blood pressure in November, to high blood pressure and am on medication for that as well as having tachycardia issues. I've had unexplained rashes around my groin area, to migraines to Retinal Ischemia in one eye so far, as well as bouts of losing some of my hair. My blood work at the rheumatologist showed no signs of Lupus, although he is leaning towards this as my diagnosis. The next time I have a flare up with my rash, he wants to do a biopsy. Many of the symptons I have sound like so many of the people on this website. I feel like a baby. I feel scared too. Do you think that the biopsy IS the way to go?
    Please help!!!

     
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    Old 10-11-2008, 10:16 PM   #2
    justpeachy1
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    Re: I could use some guidance PLEASE!!!!

    I wish I had an answer for you but I would say to go with what your doctor says and have a biopsy the next time you have a flare. That way you can hopefully get a good diagnosis. God Bless.
    Joni

     
    Old 10-12-2008, 06:25 AM   #3
    VeeJ
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    Re: I could use some guidance PLEASE!!!!

    Dear PW, I think a skin biopsy is definitely a good idea! Hopefully, in addition to the usual microscopic work, your dr. will order immunofluorescent stain tests that look for aberrant deposits of immune "junk" that light up in a unique pattern in lupus-specific rashes, which helps rule lupus in/out.

    FYI, the dermie applies a local anesthetic, so you'll hurt *some* maybe an hour later. You may need a few stitches. I had multiple deep-punch biopsies & found them easy to get thru.

    Your saying your rashes itched caught my attention. I've read that most lupus rashes *don't* itch, except lupus urticaria (hives) and maybe bullous (blistery) eruptions. But certainly some MEDICATIONS can cause rashes. And some can even cause what's called "drug-induced lupus" (DILE). Maybe you could ask your doctor some *medication questions* along these lines, especially if your new BP meds PRECEDED the rashes.

    Your having arthritis so young should certainly raise red flags, I would think. I had it also; then decades of GI & urinary problems, migraines, fatigue, etc. Then, finally, non-itchy, nonscarring rashes, eventually Dx'ed as SCLE annular form. Weirdly, I remained negative for ANA but positive for anti-Ro, which is a low-percentage occurrence. Therefore, my local docs, who were about 20+ years behind knowledge-wise, didn't think I could have lupus.

    So I hope you have any & all tests offered---that you post more when you can. Meanwhile, sending best wishes! HANG IN THERE! Bye, Vee

     
    Old 10-13-2008, 06:10 AM   #4
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    Re: I could use some guidance PLEASE!!!!

    Thanks for the info and advice. The rashes came before the blood pressure meds though. Not just ichy, but H-O-T and painful like being in a vat of hot oil. Do I sound crazy????!! I was put on prednisone & antibiotics for the rashes by my dermie. I am so sick of being exhausted all the time. I don't even sleep well because of my lovely TMJ that has been acting up. Sorry to complain so much. It is hard to find SOMEONE that understands! Thanks again for your help!

     
    Old 10-13-2008, 01:07 PM   #5
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    Re: I could use some guidance PLEASE!!!!

    Hi, again. I forgot to suggest that you read about lupus. Try your library (it's free, for starters ). Dr. Daniel Wallace is one terrific author, and another is Dr. Robert Lahita. While reading can't make us experts or get us answers, it can make us better patients, I think. You can ask better questions & understand better what your doctors say. And reading sometimes prods us to find better doctors! (It did me.)

    Dr. Wallace includes info on "close cousin" and "crossover" diseases---and how they are differentiated from lupus---that you might find especially interesting. Weird, but since I first read his book, two friends have been evaluated for "close cousin" rheumatic conditions, both of which involve rashes: dermatomyositis and psoriatic arthritis.

    Does your rheumie have a dermatologist or dermatopathologist in mind, so you can jump all over your next rash, to get it biopsied at the optimal time? I *think* many rashes are most "revealing" when they're fresh & new. Anyway, keep us posted when you have time, OK? All my best, Vee

     
    Old 10-14-2008, 03:36 AM   #6
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    Re: I could use some guidance PLEASE!!!!

    Hi Vee

    I was hoping you could tell me which book in particular you are refering to by Dr. Wallace as there are so many by him, I don't know which one to buy.

    Thanks so much

     
    Old 10-14-2008, 05:39 AM   #7
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    Re: I could use some guidance PLEASE!!!!

    Hi, Shellbelle. The Wallace book I found helpful is subtitled "A Guide for Patients & Their Families", 3rd edition, last copyrighted 2005. FYI, I think all the big-name rheumie/authors (Hughes, Wallace, Lahita) *also* publish professional tomes geared to their medical peers; you DON"T want one of those, you want something patient-oriented (meaning readable)!

    Did you try your local library, where you could "test-drive"? While still looking for a Dx, I borrowed ALL the big names & found ALL had things that spoke to my mysterious problems. Anyway, take care & good luck! Vee

     
    Old 10-14-2008, 06:30 AM   #8
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    Smile Re: I could use some guidance PLEASE!!!!

    Hiya, just wanted to help if I can. I too was diagnosed with JRA when I was 16. I had been extremely unwell before that. Doctors said it was 'growing pains'. Fair enough, but now I know that Dr. Graham Hughes uses this phrase as part of his alternative diagnostic notes. It really got so much worse for me. I ended up notbeing able to move. I was very lucky - if you can call it that - in that my SLE diagnosis came within 3/4 days of being hospitalised.

    I have intermittent rashes. My malar rash though doesn't itch but is there all of the time. Since I have had SLE for so, so many years and have been on steroids for all of that time, I have rarely taken other meds for my SLE so personally can't put any rashes that I get down to meds of any type.

    As Vee has said - and she is so very knowledgeable - there are so many different sorts of rashes, but they must not be thought of as a definite part of having lupus of any type. Only your dermy can tell you what they are exactly and if it has been suggested you do in fact have a biospy, then I personally would recommend you have the tests.

    Hope this is helpful - from a long time SLE patient, not in any way a medical angle.

    goldengirl
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    Last edited by goldenwings; 10-14-2008 at 06:32 AM. Reason: misspelling

     
    Old 10-19-2008, 06:53 PM   #9
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    Re: I could use some guidance PLEASE!!!!

    Definitely get the biopsies. I wasn't fully diagnose until I had the biopsies and the samples were examined under immunoflouresence. The analysis of the biopsies is key. It was the second time I ad them done for my rash...the first time around the lab report was three sentences long and said nothing. Went to a dfferent dermo and go the proper 10 page report with photos of slides etc. The biopsies are really painless as are the stitches and their removal. No big deal at all. I have dermatomyositis and thankfully only have the skin condition. Cancer scans and muscle problems all negative. I have been on plaquenil and prednisone without any luck. Have had 2 tratments with IVIG and 50% of my rash is now gone. Have 2 more treatments scheduled and hopefully I'll return to normal color.

     
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