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Thread: Newly diagnosed and angry

  1. #11
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    Default Re: ok yet another question

    Quote Originally Posted by girlsquirrel71
    does it ever end???
    You can try taking benadryl (it will make you very sleepy). If that doesn't work, one doc told me you needed to control the central nervous system response and should try Ativan(lorazepam) for which you will need a prescription.

    I would THINK the rash would end when the flare subsides. My itching is kind of random and comes and goes.

  2. #12
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    Default appt

    I have my rheumatologist appt tomorrow at 330. I cant wait to hit him with all my questions. I am looking particularily attrative right now with this rash on my face. I am so depressed this stinks!!!!

  3. #13
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    Default

    Girlsquirrel, good luck at your appt! Or did you already have it? If so, I hope you got some answers. The only thing I can recommend on the rash is STAY OUT OF THE SUN! When mine wouldn't go away, I literally stayed inside every chance I could and was only out to walk to my car, etc. It has finally almost gone away on my back. It never goes away on my face completely but I can deal with how it is now, um, until it starts itching. dh says I am going to scratch my nose off one of these days cause that is always where it starts. {HUG}

  4. #14
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    Default finally good news!!

    I had my rheumotology appt this afternoon. He confirms the other tow doc's that I have subcuteanous lupus, non scarring. I am back on a heavy dose of prednisone and plequenil, and I am off from work if I chose for two weeks til my follow up. My face finally broke out today, I broke down at work and they sent me home. I was holding out hope that I would not break out there. Its so depressing, but in the scheme of things it could be so much worse. Thanks to everyone who has given me kind words and support, I couldn't get through this with out you.

  5. #15
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    Default

    The best thing you can do for your rash is relax and take care of yourself. I got it when I was 15 and had to drop off of the tennis team. I thought the rash was an allergic reaction to the sun or to the anti-biotics I was taking for the sinus infection I had at the time. Although the doctors never confirmed it was related to my lupus (I was unofficially diagnosed at 11) it is so obvious to me the more I learn about this disease. The rash has never come back for me (knock on wood...) but I was absolutely miserable that summer...while I used to be able to play tennis in the mornings and spend the afternoons at the pool all summer, I was stuck inside, covered up, watching tv (gained a few pounds because of it, too). Mine started on my scalp and face, and slowly moved down my body and eventually (after a few weeks) it was on my lower legs and feet...then I went on vacation with my family, and even though I kept my legs covered with a heavy towel most of the time, the sun started bringing it back up my legs. SO, take it easy, take lots of baths, and try (I know its hard) to not stress about it...that will only make it worse! And drink lots of water I am convinced that water helps EVERYTHING!

  6. #16
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    Default Miserable (day to whine)

    I am absolutely miserable today. :evil: The rash is now under my boobs and arm pits!!! :twisted: my fingers feel tight, the only new thing is the rash isn't raised any more, I am on alot of prednisone so my blood sugar is all bawled up as well. I am trying to stick it out but then the curse arrive this morning. Will it ever end??? sorry to be a stick in the mud, just frustrated. The rheumy said I dont have to return to work until my recheck on 11/21, god i hope I see improvement by then. :shock: Thanks for listening.

  7. #17
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    Default

    Welcome! Sarna lotion works for me on the rash. Believe me it was so bad i couldnt sleep for days. tried all the creams and steroids, finally pred works and Sarna (available at CVS or most drug stores.)
    Dx this year SLE but because of past symptoms and testing I think I've had it 15 years!Dx 1990 Fibromyalgia, depression, OA, migraines, plantar fasciitis, tarsal tunnel synd. both feet.Heart surg '97 for bicuspid aortic valve w/regurg. hi cholestrol.

  8. #18
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    Default Thanks for info

    I just wanted to say thank you to all of you who have given me some recommendations to get through this "itchy" period. The Sarna is a god send!!! I also love the kiss my face products, when i go back to work next week, I may peel like a lizard, but its babies butt underneath!!!!! :lol:

  9. #19
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    Default is itchy normal?

    Hi guys,

    I noticed I'm not the only one who is itchy! I was only recently diagnosed with SLE (in August) and haven't experienced any itchiness or rashes (except when in the sun) until now. I woke up early this morning scratching my leg and couldn't stop. All day at work my neck has been itching like crazy, and on top of it all my nose and cheeks are bright red. My neck is red from scratching - I look like I have sunburn! I never had this symptom before, and I don't see my rheumatologist again until the end of December (I was just there 3 weeks ago). Is there anything I can do about this itching? It's almost Thanksgiving, and I look a mess. Should I call my doctor and try to get in sooner, or just deal with it until my next appointment?

    Jodi

  10. #20
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    Default Call Now!!

    you should absolutely call your doctor. My rash started small and wound up encompassing my entire body (EVERYWHERE!!!) If it wasn't for the prednisone and antimalerial I would have gone crazy. I also got a recommendation for SARNA from CVA Pharmacy, it works and takes the itchiness out but I wouldn't put it on my face. Oatmeal baths but not too many when the redness goes away you will peel like crazy. Hope this helps. I was out of work from this rash because its was so debilatating and just finally went back today!!!! :lol:

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