View Full Version : Vitamin D Deficiency Among Systemic Lupus Erythematosis Patients

08-04-2011, 03:10 PM
Researchers have just found that vitamin D levels among systemic lupus erythematosis (SLE) patients directly relates to the severity of the disease and the development of the infection. The study found that people with low levels of vitamin D are more prone to develop SLE than those with higher levels...

More... (http://www.medicalnewstoday.com/articles/232288.php)

08-04-2011, 06:32 PM
I am on 50,000 iu every 7 days. I keep losing it. Why? I am in UV all day. I drink milk and love cheese.

08-04-2011, 06:47 PM
This is interesting because I spent a year trying to build my Vitamin D level back up. It is normal now but I do wonder if it will stay that way.

08-05-2011, 01:02 AM
not everyone has low levels of vitamin d.
i have had mine checked several times. the last only a month or so ago.
my levels are always good.

at my worst, i had major organ involvement, and good vitamin d levels.

please get your level checked by a doctor before taking supliments.

08-05-2011, 03:51 AM
not everyone has low levels of vitamin d.
i have had mine checked several times. the last only a month or so ago.
my levels are always good.

at my worst, i had major organ involvement, and good vitamin d levels.

please get your level checked by a doctor before taking supliments.

For the record, it was my endocrinologist who discovered how low my D leveled were and keep getting lower. I take perception vit D .

Does anyone else have this problemvor know why I need to increase AGAIN?

08-05-2011, 06:37 AM
Well when I was at my worst I had very low Vit d and was put on 50,000 units a week for 24 weeks. now I'm taking 1000 daily but I haven't had my levels checked. This is great information, thanks for sharing.

08-05-2011, 07:06 AM
I was put on 5000 i.u daily in March. I'll get my levels checked next month and find out what the status is.

08-05-2011, 01:26 PM
I was put on 5000 i.u daily in March. I'll get my levels checked next month and find out what the status is.

Holy smokes you must have an alien eating it! Daily? Sheesh!

08-06-2011, 07:42 PM
I have to take 50,000 IUs twice a week.

08-06-2011, 07:50 PM
Mine fluctuates. It is usually fine, but when it dipped very low I was on the 50,000 IU for three months.
I take 2000 IU every day now, plus there is D3 in my multi-vitamin.

This does seem to be an issue for those of us with AI issues, whether we get much outdoor time or not.

08-07-2011, 06:16 AM
At one time my Vitamin D levels were low and my endocrinologist put me on Vitamin D. I don't know what they are now. I'll have to ask my doctor next time I see her.

08-08-2011, 04:47 PM
I was low on D so now i have to take it everyday.. i didn't think it had anything to do with lupus..

08-26-2011, 03:33 PM
I too Have a vitamin D deficiency & I have to take one a wk 50000 IU's. This has happened to me before so it's highly possible that lupus has an affect on the lack of vitamin D in your body. I am no dr but how many ppl who have Lupus have this issue? It's good to beable to talk these things so ppl are able to compare notes.

08-26-2011, 05:03 PM
It is kind of a catch 22 on the Vit D. The disease seems to make us low on Vit. D but we can't get in the sun to replenish the Vit D so we just stuck

09-01-2011, 09:29 AM
This is a very interesting article. I had very low Vit. D found a few years ago, I took a course of 50,000 dosage for a while and it went up to normal. Than again....we did the same treatment. The test for D that I did last week was borderline low. I am not sure if the doc will treat it or not, I havnt heard back.

I live in high elevation so even a little time outside is a big dose of sun. In fact when I first moved here I sat outside on a semi-sunny day for 30 min and my exposed skin was raised, patchy, burning, red disgusting-ness like I had never seen before! I am pretty sure that I get enough sun to recieve the D vitamin, but my body cannot process it either by digestion or through the skin.

09-15-2011, 07:13 AM
I am new to this site so alittle about me. I am 31 live in ky and work as a nurse. I have a three yr daughter who is my world. I made a previous post about if i lupus or not. Anyway last time i had blood work they told me my vid d was borderline low and that i could just take a otc vitamin nad that should be enough. I had no idea it was linked to lupus also. I have not been diagnosed with lupus but am alomst convinced since become a memeber here that i do have it. I also have kidney stones so i was under the impression that even a vit with d in it would be bad for me. ?? anyone know if this is true. thanks hope you get your situation taken care of.

chef marv
09-15-2011, 11:49 AM
I too suffer from low vid d... last check i was at 16. I dont know if its due to the sle but i do know that the lupus threw off my parathyroids and that controls vit d and calcium levels in the blood. i have to take calcuim and vit d supplements too on top of other meds... i found that 2000 iu a day does a great correction

11-20-2011, 06:04 AM
I too had Vit D low. If you look around most auto immune conditions all have low Vit D levels e.g. MS, included. My neuro started looking into it and said no matter which condition it turned out if it is low by increasing my levels could help with length of flares and remission.

11-26-2011, 04:50 PM
I see a skin cancer doctor once a year to get checked out and I cannot maintain m levels of Vit D, the doctor is always asking if I have taken my supplements.

I told him about my recent diagnosis of Sjogrens and he said it all falls into place, people with Lupus and Sjogrens are notorious for not being able to maintain Vit D levels and with one of his patients, she has bad Fibro pain and when he increased her Vit D levels and monitored her blood, her fibro pain all but went.

I have been increased to 8 tablets a day now till my prescription strength arrives, fingers crossed it helps with the awful symptoms I have.

11-26-2011, 08:19 PM
I was on 50,000iu a week for about 6 months to get to "normal" about 2 years ago...and have taken 1,000-2,000 a day ever since...keeps me JUST into the "normal" range. It does seem like it's a key factor in Lupus and lots of other AI diseases.

11-28-2011, 01:43 PM
I had problems with Vitamin deficiency too, had bad muscle spams because I had no Vitamin D, but brought that up with prescriptions and now on a daily over the counter multi-vitamin and it has helped me sustain a normal vitamin D level.

11-29-2011, 12:43 AM
I was taking 50,000 daily for 2 weeks and then my rhumey Dr. put it to 5,000 i.u. daily. My B12 level was really low too. So, once a month I get a B12 shot.

01-13-2012, 08:56 AM
My Vitamin D has always been low, but I was never prescribed anything for it. However I had a recent visit to the doctor, and he put me on some based on a blood test from '09. I don't have money so he doesn't like to run tests unless he has to. Current dosage is 25,000 IU daily for 2 weeks, then 25,000 IU every other day until the bottle is gone (I think it's 30 pills so a month and a half)

I don't know if it's the placebo effect or not, but today is my 3rd day and I think I actually am feeling better, less finger pain, and I'm not so tired...though I'm still tired.

01-13-2012, 09:56 PM
Our town Dr. here has everyone on 50,000 IU weekly, he swears by it. Now my sister takes it because her vit D level was low but she's not sick and she said it gave her a real boost in energy. I'm on the same dosage and don't even notice but maybe I should suggest taking it like you to get that little boost. I wouldn't care if it was a placebo effect or not as long as I got up off my rump. haha

01-15-2012, 01:32 AM
lol don't get me wrong :) I still slept 12 hours today! But when I'm awake I don't feel quite so exhausted, it kinda feels like things I want to get done might be just a little more achieveable :P