Lupus/Mixed Connective Tissue/DHEA/Melatonin

Discussion in 'Fibromyalgia Main Forum' started by karalvd, Aug 31, 2006.

  1. karalvd

    karalvd New Member

    This is a question for those who have lupus or mixed connective tissue disease...

    I have been searching for answers for this horrible disease, I know one exists. I came across DHEA research being done specifically for the treatment of lupus. This would be great if it does help, since I know that remedies of this sort aren't regulated, you have to be sure that the OTC stuff doesn't have alfalfa as a filler. Anyway...to the point...I started taking it last Friday and I swear I have noticed a huge decrease in my Raynaud's episodes. I have only had one episode that involved my tongue. This is huge for me. I have Raynauds to the Nth degree, and I'm so tickled to have found this. My neck seems to be feeling a bit better, and my throat problems too. Maybe this is just a placebo effect, but has anyone else taken DHEA and seen results?

    Melatonin-I have taken it to help regulate my sleep for probably three years now. I read that if you have lupus you should not take it because of it boosting your immune system. I called my doctor's office, and they agreed. I called one of the pharmacists at the pharmacy I used to work for and he looked it up in a book that had the same answer. So I guess this is a warning and a question. Has anybody else seen this as a trigger?

    One last note-I'm sorry for not responded to some of the folks who helped me out in my last post, but I've been set back with a UTI on top of a sinus infection.

    Thanks,
    Kara
  2. TerryS

    TerryS Member

  3. sorekitty

    sorekitty New Member

    I have fms and cfs. My doctor just started me on DHEA. He gave me an RX to a compounding pharmacy. He said (as you did) that you cannot always trust what is over the counter. I am on 10 mg daily so far for 3 weeks. I told my doctor(just yesturday) that I really did not feel anything different. He said it can take up to 3 months to notice a change. He took my blood to measure the DHEA level(and a bunch of other bloodwork). My first bloodwork showed that I was low in DHEA so that is why he put me on it. I really hope it helps you. Keep us posted.

    Molly
  4. sorekitty

    sorekitty New Member

    Kara,
    Sorry I just noticed that this was a question for those with lupus or connective tissue problems! I'm so embarrassed.

    Actually I'm early in the testing process so at this point I am fms/cfs (and endo) and don't know much more than that about my body yet.
  5. karalvd

    karalvd New Member

    Molly,

    When I got an email notification of your reply all it said was the title which was "DUH." I was like, "Oh no, someone thinks I'm a real idiot and should know better." LOL.

    Heck, who knows, DHEA may help all this stuff. We'll see. ;)

    -Kara
  6. Theresa

    Theresa New Member

    I am only borderline positive for lupus but why is alfafa a problem? I just bought some the other day.
    Take care, Theresa
  7. karalvd

    karalvd New Member

    In every book on lupus I've ever read (and my rheu and primary care) have said alfalfa triggers flares and in some cases triggers the disease altogether. I can't recall the exact reason, I'll get back to you on it though. I just got back from Walmart and am having serious brainfog issues. ;) Something just hit me the other day, I wonder if it's breathing the alfalfa as well? I raise goats and it's in their hay. Can seem to find an answer on that one.

    -Kara