View Full Version : Low Vitamin D & Lupus?

12-14-2010, 08:32 PM
Hi all. Just wanted to give an update and run something by you...I spoke with my rheumy through email today who wants me to have another CT done in a few weeks to make sure the pneumonia/pleurisy is resolved & the treatment worked.

She also said my labs from 11/30 looked good except my vitamin D level is still low. So I was put on 800IU's of vit d a day along with my daily vitamin. Does anyone else have problems with low vitamin d levels? Im not sure why I would as I drink milk and have a regular calcium/vit d intake, take a daily vitamin...im not breastfeeding anymore(i haven't been for almost 6 weeks now)and i dont stay totally indoors but only go out for short periods of time. Why would this be affected?, I have also never had low Vit D levels before now. Thanks. -Lupie Britt

P.S. Im currently on the following meds: Plaquenil, Keppra, Prilosec, Multivitamin, Vitamin D, Colace, Folic Acid.

12-15-2010, 10:21 PM
Hi Britt,
I've had all kinds of vitamin D issues. Mine goes up and down like a rollercoaster. The doc had me taking 50,000 units a week for a while. Now I take 1000 IU per day.
There seems to be a link between AI issues and vit. D deficiency. Of course, it doesn't help that many of us have to avoid the sun, too. There have been some threads here about it, and I've seen a lot of discussion about it on the Sjogren's site.

12-27-2010, 07:23 PM
I don't know how I missed this thread but I am sure glad I found it today! Yes! Vitamin D being low is classic in Lupus and the majority of Autoimmune diseases. It is low to start with and then many of us stay out of the sun due to light sensitivity which brings it down even more. I currently take 50,000 IUs a week and after 3 months we will go to the daily high dose. As was explained to me Vit. D is one of those things that unless you keep pumping it in you lose it. Getting it up isn't enough. You have to get it up and then keep taking enough to keep it there.

So yes, there is a link between Vit D and Autoimmune issues as Marla said

12-29-2010, 04:25 AM
In my attempts to find something alternate to steroids and methotrexate I visited a natruopath who suggested that most of her patients with lupus and other autoimmune diseases suffered from really low levels of vitamin d. She sent me for a blood test to check my levels to make sure I was taking enough vitamin d (I've been taking 1000ui per day since I was diagnosed in June this yr...my levels are all good but if I forget to take it some days I do notice that I get a small amount of swelling in some of my finger joints (as opposed to no swelling at all when I take it)

12-29-2010, 04:50 AM
I have to take Vitamin D every day or I get really weak. Then I have to take Magnesium because my nose gets dry and bloody from taking so much Vitamin D. Wierd I know. I was a little shocked when I found out my Vitamin D levels were so low, but I have been avoiding sunlight so I guess it makes sense!

12-29-2010, 10:01 AM
From what I have read it is kind of a chicken and egg kind of thing. Is our Vitamin D low because of the AI issues or do we get the AI issues because of the low Vit. D? Either way we need to focus on getting that D up!

12-29-2010, 11:25 AM
My vitamin D is constantly low. I drink tons of milk and also take a supplement. I guess it is just one of the crappy things that go along with having lupus!

01-01-2011, 06:04 PM
Mine was also found extremely low @ 10 when i was going through all sorts of other
blood work 3 yr's ago and lupus ,sjogrens type symptoms. Was also put on 50,ooo units
for a week then 1,000 a day for rest of my life. And i was in and out of the sun. It still is tryin
to get low agan even on 1,000 a day!

01-01-2011, 08:04 PM
I also have to take 50,000 units weekly and I imagine I need to followup with my doctor on regular testing. I was tested a few times and it was always low. I wondered why my nose was dry and glad to know it's from Vit D.

I also had pneumonia in early December, hospitalized for 4 days. They said it was probably caused by the prednisone since the only symptom I had was weakness and shortness of breath.

What are others doing about their anemia? I had 2 transfusions when I was in the hospital and that helped for awhile but I wonder if I should be taking iron supplements??

04-23-2012, 03:11 AM
Bumping this old thread because I recently had labs drawn and was surprised to find that my Vitamin D was At 11. No prior issues with Vit D. Last Spring, I had an issue with Zinc, of all things.

Anyway, after reading the symptoms of Vitamin D deficiency, it makes perfect sense why I've been feeling under the weather lately-yet not in a flare. I'm hopeful that Vitamin D supplementation will be the easy fix.

Ask your doctor to add this test to your next lab draw. It could explain the fatigue, muscle pain, low grade depression, weight gain and insomnia that you've been experiencing.

04-23-2012, 10:22 AM
Pretty normal for us lupus people to have low vitamin D, I know mine is low unless I take extra vit D. My doctor told me that it's pretty normal for people with lupus to have low vitamin levels.