[mumsy613]

I don't know exactly where else to post this. I don't know about everyone else on this site, but I have become aware that Lupies are notoriously vitamin D deficient. Well, gee whiz. I guess so. We literally hide from the sun and slather ourselves with sun screen.

After my third Rituxan treatment, I found myself to be feeling rather low. Now to find that adding Vitamin D3 to my pill pile is helping quite a lot. I have thrown away all my hats and sunscreen in makeup etc and only use it when I am to be out in the sun for extended periods. I am taking 3000 IU of vitamin D3 and walking in the sun for 10 minutes at noon. I watch my calcium as well. I feel so much better overall...it is amazing.

I know this is heresy, but by George....it works for me! The anti-coagulant properties of D is worth it alone. I might even get off this coumadin nightmare.

Best to all, Fran

 

[Lily]

Hi Fran,

Not all lupies have this problem, and it's best to have a blood test to confirm if it's actually the case. If it is then supplementation is a good idea to bring levels back up to normal. Sometimes those levels even stay up without further supplementation after an initial six month course.

Good dietary sources of Vitamin D are fish and eggs. Unfortunately I'm allergic to both, but managed to keep my levels up for some years after an initial 6 months of 1,000iu daily supplement. 3,000iu is quite a high dosage Fran, just be careful of toxicity because it's a fat soluble vitamin and is stored in the body rather than excreted like water soluble ones if our intake is too high.

I can't do the 10 minute sun thing without protection, it wreaks havoc with my kidneys and vasculitis. I'm having tests done now on Vit D to see if my deficiency has resurfaced.

love
Lily

 

[mumsy613]

Forgot to mention that with Rituxan, I am not very sun sensitive at all. But of course that all comes back with the b cells. The toxicity of D is in hot debate at this point. The old RDA levels are being challenged as too conservative. It will be interesting to see what happens in the future. Until then, I guess the old numbers rule.

 

[KarolH]

My pcp as well as my Rheumy doctors both say that the majority of people, sick or healthy are lacking Vitamin D. I thought this was interesting. Ironically my Vitamin D levels were great.......the rest of my blood work was not so hot.:lol::lol::lol:

I hope your well and thanks for the info provided in this post.

 

[Maia]

I tend to get some "unprotected" sunlight every morning when it's warmer out too (try to get out before 10am though). Mostly because it doesn't affect me too much & I prefer to get my Vitamin D without a pill whenever possible. I prefer natural ways of doing things as much as I can.... and I feel the advice I've heard of medical professionals telling just about everyone to avoid the sun completely and never go out without sunscreen goes a bit too far. Skin cancer is a concern of course, but I am also concerned about chemicals in sunscreens for healthy people and especially small children.

There are definitely some lupus patients that are vitamin D deficient, and some also can't go out in the sun safely for any length of time. Definitely getting vitamin D through supplementation in food or through pills is a very good thing under those circumstances.

Regarding RDA levels... I believe they were made as the minimum amount to avoid a deficiency. That was their original purpose. Now some people are calling for them to be made according to evidence for optimal health - hence the discrepencies. It will be interesting to see how that all pans out!

 

[Barb G]

I was found to be severely Vitamin D deficient several years ago, on the verge of life threatening, despite the fact I have always been a sun worshiper (and have the sun damage to prove it), and despite the fact I took multivitamins containing Vitamin D for most of my life, was a daily milk drinker into adulthood and was drinking soy milk supplemented with Vitamin D2 at the time I was tested. After it was discovered I was D deficient, I did some research and learned that D2 is not bioavailable (the body can't utilize it) and that the multivitamins I took for years contained D2 and not D3. My rheumatologist prescribed Vitamin D3 compounded by the hospital/clinic he's affiliated with, 1200 mgs daily, which I took for approximately two years. I also made an effort to spend more time outdoors in the sun, resumed drinking milk supplemented with D3, and made an effort to eat sardines, salmon and other foods that contain D3. Result: slight improvement only. I remain Vitamin D deficient despite all of the above and continuing to take D3 tablets. At this point, I suspect there's something genetic going on or there's a disease process going on that is leaving me Vitamin D deficient. Who knows whether or not I will ever learn the source of the problem.

Barb

 

[mumsy613]

The genetic concept is interesting. I took Cod Liver oil (icky stuff) as a child for rickets. I grew up in the desert southwest US and played in the sun daily. My mom locked up the milk because I craved it to the point that I would not eat anything else. In spite of that....rickets?

Since then, and all through the decades of fighting one autoimmune disease or another, no one ever mentioned that somewhere around half of lupus ladies are D deficient. It remains to be seen if supplementing helps modify disease for me, but I'm willing to give it a try.

As long as I can tolerate a moderate amount of sun exposure, I am all for that...as long as it works. One more vitamin pill doesn't bother me at this point.

I already take mega doses of folate, B1, B12 (by injection) in an effort to lower homocysteine and theoretically lower my tendency to clot. I take them to appease my Dr. The only med change that has ever had any effect on my homocysteine is cutting off hrt (estrogen only). Homocysteine doubled! So....should I raise my risk for blood clots with homocysteine or estrogen? Sometimes it is better not to tinker.....:hehe:

 

[Karen B]

ok so check this out:

I'm brand new, no dx, no meds - but close, weak positive ana and positive dsDNA, my rumy didn't want to call it yet but checked me for d defficiancy and rxed 50,000 ius -

it is all that I am on - so I looked it up and there is a link between d defficiancy and lupus more than what you'd expect because you've kept yourselves protected from the sun (I obviously haven't) it has to do with the way the body processes UV light and they found 67% lupus pt deficient - wait there's more - adding mega dose vt D can be theraputic for auto-amuine disorders like lupus and diabetes.