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Lifetime struggle

Discussion in 'Introduce yourself' started by Jonny, Aug 21, 2016.

  1. Jonny

    Jonny New Member

    Hey Everyone! I am a 32 year old male who has been diagnosed with SLE when I was 15 years old. I have also been diagnosed with Sjögrens Syndrome. I have struggled my whole adult life with arthritic pain and fatigue, but the reason I am getting on an Internet forum is I am beginning to feel overwhelmed. my arthritis is the worst it has ever been, my liver and kidneys are getting grumpier and grumpier, and most recently I have completely lost the patches of hair above both ears. The hair loss is really worrying me, and I have also had a rash on my chest for weeks now. If anyone has any similar experiences or any natural products/techniques to help with hair loss especially please let me know. I don't personally know anyone else with SLE and I would love some encouragement. Have a beautiful day :)
    - J
  2. x_claire_x

    x_claire_x Moderator

    Hi Jonny,
    Sorry for what brings you on this forum, but glad you have found us.
    My daughter trained with a celebrity stylist in London and would have several recommendations for hair loss; however, most of yours sounds as if it is coming from your SLE being out of control at the moment, especially with the other symptoms you describe.
    Have you informed your Rheumy of what is going on? Think it may be time to get reassessed and your meds tweeked a bit.................what meds do you take ?

    When you say your Liver and Kidneys are getting grumpy...what exactly is happening ?

    Sorry to ask loads of questions !! My speciality....:D

    Welcome and hope we can help............Claire
  3. Jonny

    Jonny New Member

    currently I take a low dose of Prednisone daily (which I know does not help the hair loss) as well as Plaquenil. I have been found to a new doc for about 7 months now and we are still in the tweaking of meds phase. my liver enzymes have been elevated lately and my kidneys have been painful for a day here and there for the last couple months. ultrasound did not show any lumps/tumors etc. so that it a little good news. thanks for responding like I said I just need to vent and talk to others who really understand SLE
  4. Jessica1

    Jessica1 Moderator

    Hi Jonny and welcome.
    You've come to the right place for a good vent and to be among people who just get it. It sounds to me like you're in a flare and need to get it under control; I hope your Rheumy can do that for you. I don't know if this would help you or not but I have used Dermovate lotion on my scalp when I used to get patches of hair loss that for some reason would be symmetrical on my head. This is a steroid based lotion but liquid rather than cream and needed help to apply it but it worked wonders for me and the hair always grew back. Obviously I can't say that it would be the right thing for you and that your hair loss patches would grow back but there is hope there. Maybe a dermatologist would help with that if your Rheumy can't?
    Best wishes,
  5. iamdone

    iamdone I am hopeful

    Hello, I also have SLE and was experiencing alopecia. Plaquenil is the culprit in my case. Since I have to take it, my rheumatologist suggested I see a nutritionist. I was put on a regime of vitamins and supplements for my particular issues. I was also told I need to be gluten free. Once I stopped eating gluten and sugar, I have felt a lot better, dropped some pounds, have more energy and my hair is growing back. You may try seeing a dermatologist too, as they can help with all of our pesky rashes. Best of luck to you!

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