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    Includes Expert Content
    Question for Dr.V
    FallenAngell posted:
    Dr.V I wrote you last week about the bad experience I had with my Dr.But I need to ask you this, I recevied a phone call from the Dr.s Office on Friday. I was told that my Vitamin D is low and I asked Why When I have been taking 1000 Ius A Day for the last 3 years...She did not have an Anwser for me, She only said that they were calling me in a Prescription for Vitamin D, I Am Now Taking 50,000 Unts once a week. Dr.V Can you give me some ideas as to why My vitamin is Low after taking 1000 ius for the last 3 yrs ? I can't help but wonder if all of this is related to Lupus. And this rash on my face is driving me completly crazy Dr. Thank You Sincerely Fallen Angell
    Sincerely Fallen Angell
    Elizabeth_WebMD_Staff responded:
    Hi FallenAngell and Welcome!

    In addition to the info about Vit D that Lupylisa and lisaisweavebee provided here , I wanted to pass along this article -

    Are You Getting Enough Vitamin D?

    It not only talks about absorption but on page 3, talks about acceptable levels and how they are measured.

    You have many great questions and a complicated history. I understand you are seeing a new doctor soon. Please see this info, Making the Most of Your Appointment, to help organize your history, medications and concerns/questions. Hopefully you have a copy of your last lab results and/or tests to also bring with you.

    Hoping you find answers soon,
    FallenAngell replied to Elizabeth_WebMD_Staff's response:
    Thank You Sooo Much, Sinecerely Sabrina : )
    Sincerely Fallen Angell
    R Swamy Venuturupalli, MD, FACR replied to FallenAngell's response:
    I agree with the information posted above. The topic of vitamin D replacement for lupus is an evolving one. I will try to comment on it in greater detail in the future. There are numerous publications suggesting that low vitamin D levels are associated with lupus flare and it seems like vitamin D levels are abnormally low in a majority of lupus patients. I usually recommend that lupus patients try to maintain their vitamin D levels between 40 and 60 mg/dl. Some patients require more oral supplements than others- it might be related to how much sun exposure they receive, the ability of their GI tracts to absorb vitamin D and their diets etc.
    K2isKsquared replied to R Swamy Venuturupalli, MD, FACR's response:
    Dr. Venuturupalli,

    Thanks for focusing on this issue. I'm zeroing in on my GI tract as I seem to be deficient in D, Calcium, and Magnesium. That along with constant tummy troubles lead me to think I'm not absorbing enough nutrients.

    My Rheumy has me on extra D and my Gyno has me on extra calcium, but as a person who has always chugged milk (with A & D included) from childhood on I have to think I'm just not picking up what I need.

    I haven't had to take a lot of prednisone, so there's not a good explanation for bone loss; and at 2 - 3 gallons of milk a week for life I'm just not a logical candidate for the osteoporosis my bone scan revealed.

    Many thanks for all your informative replies,

    R Swamy Venuturupalli, MD, FACR replied to K2isKsquared's response:
    I agree with you and recommend a GI work up in anyone who has signs or laboratory features of malabsorption. A gastroenterologist is usually someone who could work this up for you. Make sure that you have been worked up for celiac disease as well (gluten sensitivity).
    itnam replied to R Swamy Venuturupalli, MD, FACR's response:
    Is there a difference between celiac disease and gluten sensitivity? And is it the same as a wheat intolerance? I'm in my 50's. As a child I was told I had a wheat allergy so was raised wheat free. I still avoid breads out of habit. Recently tested negative for celiac during a colonoscopy for anemia. Thought that meant I outgrew my wheat problem. It's all too confusing.
    R Swamy Venuturupalli, MD, FACR replied to itnam's response:
    Here is an article that might help you understand this issue a bit better.
    tigermom23 replied to R Swamy Venuturupalli, MD, FACR's response:
    Hi I was diagnosed with Lupus after my 4th spinal surgery. I wasswollen to the point that I couldn't bend my fingers or make a fist, I had little reddish spots all over my legs, my face had the Lupus flare, all my Glands in my head and behind my ears were swollen, and I had a horrible headache and joint pain all over.
    By the time I made it in to the doctor the mysterious symptoms disappeared....but I was insistent he do a ANA test for Lupus. So we found out I had Lupus SLE and ever since I have been Dx'd with it I have had to have 6 more spinal surgeries...and after each has been fused I have to have the hardware removed because my body starts attacking it. Once my body formed a 4 inch fluid filled cyst over the hardware, which amazed my doctor who was in the process of redoing the surgery.
    I have also developed fibromyalgia, SLE, Lupus arthritis, migraines, chronic fatigue syndrome, restless leg syndrome, asthma,and depression. My back is constantly buldging or messing up....I get sick all the time. I have become allergic to 3 IV antibiotics over the last 4 yrs.
    Currently I am on prednisone (the majority of the time), restasis for my eyes, zoloft, restoril for sleep, lasix 40mg and 80 mg, soma, plaquenil, singulair, topamax, azelastine HCI nose spray, klonopin, vistaril (pain meds make me itch really bad), lyrica, imuran, mirapex, kadian, percocet, savella, proventil, and systane eye drops.
    Last spinal surgery was 3 wks ago and I am 38 yrs old and disabled. I hate it, I am still taking classes via the internet for my masters that they say I'll never use. I have trouble walking without my cane or standing up straight for long periods of time. This last surgery was 5 levels from S-2 up....
    My problem I keep having is with my stomach....anytime I can be out somewhere,,,,then I have to rush to the bathroom. Stomach cramps, sometimes diahreah, its very embarresing for me and my children. I also keep getting the migraines, fever, and the rash all over my arms/legs, and my face is red on my cheeks and nose.Does anyone else have problems with horrible hot flashs all the the point where my shirt is wet and so is my face? I just don't know what to do anymore.
    Now they said my 14yr old daughter has a high ANA test and has been having joint pain....have a tenative dx of fibro....but hope its just her weight and growing pains.....any advice? Sorry I hit you with a lot of information and questions.

    Thank you
    tigermom23 replied to tigermom23's response:
    Also I have low vitamin D, and take Omega 3, Voltaren Gel for hand pain, super b complex, asmanex, Vitamin C, Triple Omega. These are some of the other pills I take also.

    thank you,

    With Lupus

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