View Full Version : vitamin D and Lupus

09-16-2006, 09:44 AM
I was wondering if anyone else has had their vitamin D levels tested? My rheumatologist said that they are now finding that most people with autoimmune diseases (not just Lupus) have low levels of vitamin D. I had mine checked and low and behold my vitamin D levels were low. I have to take 800 IU of vitamin D to get my levels high enough. Apparently this is a new area of autoimmune research and they think it is important to correct the vitamin D levels because vitamin D has a natural immune suppressing effect. But donít run out and start taking extra vitamin D without having your levels tested because vitamin D is a vitamin that can have bad affects if overdosed.

Does anyone else know if they have low levels of vitamin D?

09-16-2006, 09:59 AM
Yeah they test my vitamin D all the time and have put me on supplements! It's not uncommon...

They started me on 50,000 IUs once a week plus the 400 IUs daily that are in my calcium pills... Now I am down to 50,000 IUs once a month plus the 400 I take daily...

10-06-2006, 02:35 PM
Yes, my nephrologist put me on 50,000 IUs once a month. Mine was obviously very low. Plus I am taking calcium and vitamin D twice a day. Hopefully this information will help you.

10-07-2006, 03:58 AM
Interesting! I haven't been tested, but am on a minumim of 800/day for osteopenia.

I'll ask my doc to add that to the tests this next go-round.

Shortly after I was diagnosed, I read an article about low vitamin D leading to autoimune problems - and that being a difficult balance since we're told to wear sunscreen all the time. But THIS is new information.


10-09-2006, 09:19 PM
My vitamin D level was also very low. I developed secondary hyperparathyroidism. I went to an endocrinologist. She has me taking 2000 mgs per day for a month and then 1000 mgs per month until I see her again in December. I also read an article on the NIH website that they were investigating a possible correlation between low vitamin D and autoimmune disorders.

10-15-2006, 01:17 PM
I'm new here...46 and just finally being diagnosed.....but now my doctor tells me my vitamin D is low...i also have to take a osteopososis test soon. This is such a frustrating disease...it is constantly something new to deal with....I believe I have had this since I was a teenager....had a bad bout with mononucleosis and have struggled with fatigue for years....not just the regular fatigue.....the kind that disables you......now having lots of other problems....it's depressing

10-15-2006, 04:11 PM
Hi Cherlock,

Welcome new friend,we all understand your frustration. It is such a mysterious disease, one that can hardly be defined in certain parameters because it changes characteristics (it seems everyday) so often.

You have found a wonderful place to be; everyone here is wonderful to share their experiences, their wisdom...and they're are so so many who know so much more about this disease and they will be happy to answer any questions; or if you need some new ideas - I have found this to be such a healing place to be. When I'm too tired to explain this disease to "one more person"; and I feel like I just want to scream, I come here. You will find new friends here.

Stay plugged in, stay hopeful - it is so very important. Be encouraged that you are not alone with this disease - we're here for you; whenever you need to scream, cry, vent....and we really like it when we can even laugh out loud sometimes....so again, welcome. We're so glad that you're here.

Our "mom" and Moderator, Saysusie will be by to introduce herself to you. You will instantly fall in love with her. She is a walking encyclopedia of knowledge and has an endless supply of love and encouragement. So let the love in....take of your shoes and stay for awhile....stay a long while - welcome to your new family of sisters and brothers !!

Much love,