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Thread: Lupus and vitamin D

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    Default Lupus and vitamin D

    My doctors office called and told me my lab work form last week showed a very low vitamin D level I think she said it was 5, there is so much going on right now I didn't ask the questions I should have, she did call in a prescription for a supplement, I was just wondering if anybody else has this or what it means
    - gary

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    It's very common for people with autoimmune disorders to have low Vitamin D - though as far as I know, nobody really knows WHY.

    I'm sure others will reply, but I was on 50,000iu per week for about 6 months to get into the "normal" range. It's very difficult to get your levels up adequately with non-prescription supplements.

    I definitely felt better after my levels were up...the Lupus didn't go away by any means, but I had a bit more energy.

    Hope that helps....

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    Yes, it is very common, for lupies to have very low vitamin D levels, almost everybody, or at least the majority on this site has had it.
    What it means? I don't know, but we all have one thing in common, we can't be in the sun for a long time.

    Debbie
    I may have been dealt a bad hand, but at least I'm still playing with a full deck. ( most of the time anyway).

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    From what I have learned there is a question about the Vit. D. Is ours low because of the AI disease or does it get lower because we are will and stay out of the sun? Either way, as the others have mentioned, almost all of us have that issue. The doc. will put you on some meds to bring your levels up and then, once up, most likely put you on over the counter D to try and keep it up.

    Once again... just another Lupie thing
    Mari

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    Thanks, I do stay out of the sun as much as possible, I can't drink whole milk, I don't tolerate it well so I wasn't surprised it was low, but I was doing some research on the internet about it, and I found out that a low vitamin D level could indicate a AI disease, I now know for sure that I have SLE and sjogrens, and tomorrow I am having a MRI of my brain because I am showing signs of MS, so we will see how that goes. but nothing shocks me anymore!
    -Gary

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    I found out the same way. He had me take 10,000 iu dailyfor a month and then put me down to 5,000iu daily. In Alaska we have darkness allot and can't be in the sun in the summer. Also, my Dr. told me that if I use a Happy Lite (can find at Sam's club) for a hour a day or more a day. In the morning and that helps me with depression and vitamin d

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    Gary,
    I'm another one who has had the low vit D. I took the 50.000 IU prescription for three months and I now take 1000 IU OTC every day.
    Have you checked out the Sjogren's site? http://www.sjogrens.org/

    I also had the spinal tap for MS symptoms. It was negative. It seems that Sjogren's likes to mimic MS.
    Good luck with your testing.
    Hugs,
    Marla

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    Marla,
    That's the problem, all these AI diseases mimic each other, my doctor suspects MS because of some of the symptoms I have. My eyes flutter real fast at times, my legs and feet are numb and tingle constantly, it never goes away, I have small tremors, when I walk down flights of stairs I feel like I am off balance and going to fall, but I am going in a couple hours to get a MRI, so we'll see what it shows, alot of these symptoms I have had for years, just thought this was normal stuff that happened to everybody, If the rash didn't show up on my face, I don't know if I ever would have went to a doctor for this stuff.

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    Quote Originally Posted by gkf109 View Post
    Marla,
    That's the problem, all these AI diseases mimic each other, my doctor suspects MS because of some of the symptoms I have. My eyes flutter real fast at times, my legs and feet are numb and tingle constantly, it never goes away, I have small tremors, when I walk down flights of stairs I feel like I am off balance and going to fall, but I am going in a couple hours to get a MRI, so we'll see what it shows, alot of these symptoms I have had for years, just thought this was normal stuff that happened to everybody, If the rash didn't show up on my face, I don't know if I ever would have went to a doctor for this stuff.
    Good luck with the MRI Gary. Be sure to let us know what they find out.

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    Thanks Rob, Glad to hear everything went good for your your dad!

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