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ljames
10-21-2010, 07:14 AM
I went to a new rheumy last week and she said that my joint pain is not lupus but a severe vitamin D deficiency. Has anyone else heard of this?

tgal
10-21-2010, 08:56 AM
Hi lgames! I can't speak for everyone but I can tell you that Vitamin D deficiency is VERY normal for people with autoimmune diseases. My Vitamin D level is almost non existent. I take mega doses of Vitamin D a week to try and keep it up. From what I have read no one is sure if the Vitamin D issues are from the disease or a side affect of not being able to go outside and get in the sun. I believe it is a bit of both. I am not a big fan of doctors right now and yours may be completely correct however in my experience they only look until they find something, anything (like low Vitamin D) and then they stop looking. They don't usually try to figure out why the Vitamin D is so low.

Hopefully you have a good one and the mega doses will make you feel better

magistramarla
10-21-2010, 09:48 AM
Tgal is right. Many of us here and on the Sjogren's forum have a vitamin D deficiency. My levels go up and down wildly. I've had to take the mega-doses a couple of times, and I take 2000 IU daily when I'm not on the mega-dose.
I don't have a lot of sun problems, so I do get out and walk on the beach. I'm convinced that the AI issues make it so that we don't process vitamin D correctly.
Hugs,
Marla

Nonna
10-21-2010, 11:29 AM
Vitamin D Deficiency is also involved in thyroid/parathyroid issues. If you have low vitamin D you have trouble absorbing calcium and other minerals. Both my neurologist and endocrinologist are concerned about these levels. Vitamin D is one to watch.

Hugs,
Nonna

Bonita
10-21-2010, 02:00 PM
I also agree with the rest many times i had to take extra vitamin d and i have lupus polyomysitis. I think this is always going to be a problem along with many other strange things. Bonita

kim,l
10-21-2010, 09:22 PM
hi i also have vitamin d problems which my rheumi says is associated with my lupus so if you are not happy with your doctors answer get another one. kiml

ljames
10-22-2010, 05:10 AM
My ANA tested positive for the first time this August. Based on my symptons, my GP thinks I have lupus. The first rheumy said "it could be lupus, it could be fibromyalgia, it could be malignant. but in my professional medical opinion, you are fat and depressed"

So I went to the second rheumy. Again the ANA test is positive, the pattern is speckled/homogeneous and the blood and urine sed rate are elevated. The second rheumy said I don't have lupus, just a vitamin d deficiency.

This is sooo discouraging. In August, I went to my GP and requested blood pressure medicine - I give up, I need BP medicine. She asked some questions and wanted to do blood work. Lo and behold, my ANA tested positive. I did not go looking for lupus, I did not list my symptoms to the doctors because the auto response is you are just fat and depressed.

Why do people and especially the medical community treat us so bad?