Erica:
I go back and forth with this myself since I'm in the situation. I just got my script for 50,000 IU's of D refilled today for the 4th time since February. I have 46 refills (can you believe that)?
I don't know how much Vitamin D helps Lupus, but I do know what it's done for me so far. Two years ago I was at 18 (20 is the low norm in the reference range). Since I've been on Prednisone for 7 years, my Rheumatologist and I agreed that we would be happy if I could get it to and maintain, 50. After two high dose scripts, it only went to 23. That took two years because of the length of time between appointments with her and the fact that we discussed lab results months after the labs were done (fell through the cracks).
Anyway, this past winter, I started to feel really weak and jello-legged and I was actually losing my balance in the snow in the driveway before work. I fell three times. Didn't slip, just fell over. Picking up a mug of coffee would make my hand shake from the weight. I had so much muscle pain it was getting to a point of desperation. I brought it all up with my Pain Management Specialist and she referred me to two people: a muscle massage therapist and a physiatrist. Both looked at my labs and spotted the low D right away as a potential problem. The physiatrist wrote me the script.
I had been feeling weak and shaky for a very long time, years, but just chalked it up to Lupus (like everyone does for all the symptoms). The first two scripts from the Rheumatologist didn't make much difference in how I felt, but this time I notice a huge difference. Before, I only took it for 8 weeks then stopped, waited a year and took it for 8 weeks again. This time, I've been taking it once a week for 6 months straight. My last D level was 34. Getting there slowly.
Sorry this is so long, but this has been an amazing thing for me. If you read the symptoms for Vitamin D deficiencies, it can range from muscle loss and pain to joint pain, bone loss, fatigue, fibromyalgia, etc. Usually, you see rickets, but if you dig, you can really find some interesting articles. I read about a case where a woman ended up in a wheel chair because she had so much muscle loss. I really felt that was where I was headed. I couldn't stand for long periods of time (well, minutes) without feeling like I would fall over. I have so much muscle loss it's sickening. I'm not even at a point yet where I can start building, but I do feel stronger. As for the muscle pain, I still have really bad days, but it has made a difference there too. I'm hoping that if my levels go up even higher, that will subside even more.
So does Vitamin D help Lupus? I don't know what it does for the average Lupus patient, but I know what it does for me. This is trivial, but I have long nails for the first time in my life. I could never grow nails, they split at the quick, even as a teenager. My Mom, my kids, my husband are all amazed at my hands because they never looked like this.
Since my D was barely out of the reference range, I can see some doctors not treating that. That is a shame because it can help so many people. My daughter's D is at 37 and I am trying to get her to supplement since Graves can cause bone loss. I would prefer she had a script since 800 IU's of OTC D did nothing for me - I took it for a year before finding out that my D was low in the first place.
Well, I could go on and on, but I'll stop here. I keep saying that low-normal levels of some things can cause problems even when doctors tell people they are fine. I have found three things that I have to keep on top of that cause me big problems but wouldn't even raise the eyebrow of most of my doctors.
