Some News Finally. .,

[whyme63]

I was having Stomach problems along with all the other things that were happening to me..Bad Body pain, hair falling out, Severe fatigue, mouth sores, swollen gums, Depression, Anxiety attacks, etc... my Gastro.Dr.did some blood work and found out my Vitamin D. Level was really low...It was 12...Normal range is 30 to 100....WOW.. who would have ever thought or known that a vitamin deficiency could make you so sick...my Dr.put me on a high dose regime of vitamin D...I take 3 vitamin D.3 2,000 a day..And 50,000 once a week. .He said it could take 3 to 6 months for it to go up..He wants to get me to 50.... Has anyone else experienced this ? And can this happen if you have any other autoimmune disorders? I'm really concerned ....Thank you.....

[Shaysuekirk]

Yes. I had it too. After 3-6 months of the Vitamin D, it improved. I have a feeling it's out of whack again. Many of the symptoms have returned.

[whyme63 in reply to Shaysuekirk]

I'm so sorry you are feeling bad again. .And you know how bad it can be:(( You need to get it checked again...Thanks for your reply. .

[lupus-support1 Administrator in reply to Shaysuekirk]

Get yourself off to your doctor. It's important to look after yourself!

[lupus-support1 Administrator]

I am sorry to read you have been so unwell. I hope the information is helpful but, only rely on your specialist doctor. You are being treated for Vitamin D deficiency, so you will get to feel better!

Vitamin D

1. In summary, patients with SLE have multiple risk factors for vitamin deficiency. The symptoms of vitamin D deficiency are non-specific, and include musculoskeletal pains, paraesthesias and cramps. These are also commonly experienced by patients with SLE and therefore may be overlooked. Treatment of vitamin D deficiency is particularly important in patients with SLE due to other concomitant insults on their bones and in view of the possible immunomodulatory effects of vitamin D. Therefore it is important to consider the possibility of vitamin D deficiency.

Source: academic.oup.com/rheumatolo... good wishes!

2. Vitamin D is an essential steroid hormone, with well-established effects on mineral metabolism, skeletal health, and recently established effects on the cardiovascular and immune systems. Vitamin D deficiency is highly prevalent and evidence is mounting that it contributes to the morbidity and mortality of multiple chronic diseases, including systemic lupus erythematosus (SLE). Patients with SLE avoid the sun because of photosensitive rashes and potential for disease flare, so adequate oral supplementation is critical. This review will describe the prevalence of vitamin D deficiency in patients with SLE, identify risk factors for deficiency, describe the consequences of deficiency, and review current vitamin D recommendations for patients with rheumatic diseases.

Source: ncbi.nlm.nih.gov/pmc/articl...

3. Vitamin D and its prohormones have been the focus of a growing number of studies in past years, demonstrating their function not only in calcium metabolism and bone formation, but also their interaction with the immune system, which is not surprising, since vitamin D receptors are expressed in different tissues, such as brain, heart, skin, bowel, gonads, prostate, breasts, and immune cells, as well as bones, kidneys, and parathyroid glands.

Source: scielo.br/scielo.php?pid=S0...

4. Current studies have related vitamin D deficiency with several autoimmune disorders, including insulin-dependent diabetes mellitus (IDDM), multiple sclerosis (MS), inflammatory bowel disease (IBD), systemic lupus erythematosus (SLE), and rheumatoid arthritis (RA).1-4 In view of those associations, it has been suggested that vitamin D is an extrinsic factor capable of affecting the prevalence of autoimmune diseases.

Vitamin D seems to interact with the immune system through its actions on the regulation and differentiation of cells like lymphocytes, macrophages, and natural killer cells (NK), besides interfering in the in vivo and in vitro production of cytokines. Among the immunomodulatory effects demonstrated we should mention: a reduction in the production of interleukin-2 (IL-2), gamma interferon (INFγ), and tumor necrosis factor (TNF); inhibition of the expression of IL-6; and inhibition of the secretion and production of autoantibodies by B lymphocytes.

Source: scielo.br/scielo.php?pid=S0...

5.

JAN. 20, 2012

Vitamin D Indicates Lupus Disease Activity But Not Organ Damage

Vitamin D deficiency as marker for disease activity and damage in systemic lupus erythematosus: a comparison with anti-dsDNA and anti-C1q.

Mok C, Birmingham DJ, Ho LY, Hebert LA, Song H, and Rovin BH. Lupus. 2011 Oct 12. [epub ahead of print]

What is the topic?

Vitamin D exerts a wide range of influences on immune functions. Low levels of vitamin D are associated with autoimmune diseases, especially lupus. Vitamin D is activated by a chemical reaction made possible by exposure to the sun’s ultraviolet B rays. Since people with lupus may need to avoid sun exposure, this can increase the risk for vitamin D insufficiency, as can kidney failure, and treatment with steroids. Interestingly, many of vitamin D’s actions are opposite to the immunological abnormalities observed in people with lupus.

What did the researchers hope to learn?

The researchers hoped to learn about the relationship among vitamin D levels in the blood and lupus disease activity and organ damage, as well as other indicators of lupus activity such as antibodies to C1q (part of the complement system) and double-stranded DNA.

Who was studied?

209 people with lupus seen at the rheumatology outpatient clinic or hospital at the Ohio State University Medical Center between April and June 2008 were included in the study.

How was the study conducted?

Blood levels of vitamin D, as well as antibodies to C1q (anti-C1q) and double-stranded-DNA (anti-dsDNA) were measured in each lupus patient. Lupus disease activity was assessed by use of the Safety of Estrogens in Lupus Erythematosus National Assessment-SLE Disease Activity Index (SELENA-SELDAI). Organ damage was assessed by the Systemic Lupus International Collaborating Clinics Damage Index (SLICC-SDI).

Associations among levels of vitamin D and anti-C1q, anti-dsDNA, lupus disease activity, or lupus-mediated organ damage were evaluated.

What did the researchers find?

Most of the people included in the study were women who were an average age of 40 years old, and had lupus for an average of eight years. The patients had a variety of clinical features of lupus, the most prevalent of which were kidney and skin involvement. Most of the patients were taking steroids, about half were taking hydroxychloroquine, and about a third were taking azathioprine. Interestingly, over half were taking calcium supplements and about a quarter were taking vitamin D supplements. In spite of this vitamin D supplementation, about 96% of the people with lupus included in the study had vitamin D insufficiency (sub-optimal levels), while about 27% had the more serious vitamin D deficiency (much lower than normal levels).

Levels of the biologically active form of vitamin D (hereafter referred to as “vitamin D”) in the blood were negatively correlated with increased lupus disease activity (as indicated by the SLEDAI score). This pattern was also evident when relating levels of vitamin D with specific manifestations of lupus, such as disease activity involving the kidney, skin, or brain.

In addition, there was a negative correlation between levels of vitamin D and autoantibodies. These trends persisted even after adjustment for the duration of sun exposure during the month when the blood was taken from the patients.

Organ damage (as indicated by SDI score) was present in almost half of the patients, the most frequent of which included neuropsychiatric, musculoskeletal, and skin-related organ damage. In spite of this, levels of vitamin D did not correlate significantly with organ damage in the people with lupus. In addition, there were no observed correlations between levels of vitamin D and levels of complement proteins (C3 or C4).

What were the limitations of the study?

The people with lupus who participated in the study were not broken down by race/ethnicity, making it difficult to conclude about which population of women with lupus the results are most applicable to. In addition, vitamin D levels in the lupus patients were not compared to those in healthy people or to people with other immune system or rheumatic diseases. It remains unclear how levels of vitamin D in the lupus patients compare to levels seen in other people of their same age. Lastly, there are many variables that can affect vitamin D levels and the results merely demonstrate a correlation rather than a cause-effect relationship.

What do the results means for you?

The results of this study support a role for vitamin D in lupus disease activity. Specifically, this study found that most of the people with lupus included in the study had vitamin D insufficiency (sub-optimal levels), most likely due to avoidance of the sun, or perhaps to chronic use of steroids or hydroxycholoroquine, or to the low proportion of lupus patients taking vitamin D supplements.

Vitamin D levels were negatively correlated with lupus disease activity. In other words, the more vitamin D in the blood, the lower the lupus disease activity, and vice versa. Thus, levels of vitamin D in the blood may contribute to lupus disease activity, but this needs to be further investigated in larger studies.

The authors recommend that all people with lupus continue to use sunscreen and consult with their physician about adequate intake of vitamin D.

Source: lupus.org/research-news/ent...

With good wishes,

Ros

Disclaimer: No attempt is made to diagnose or to make any medical judgement. You are advised to seek the advice from your own physician. LUpus Patients Understanding & Support (LUPUS) is not a substitute for your own doctor.

[whyme63 in reply to lupus-support1]

Thank you for all the information you provided me..I really appreciate it..:)) I wish you all the best of luck in your recovery from surgery. ..

[662mylupus]

I have had to take the 50,000 units of vitamin D for 3 months at a time on 3 occasions in the past (I would say 15-18 months) along with vitamin D 2000 mg a day. I also have to now take B12 vitamin everyday (for my toe nails have been falling off and my hair falling out for about 9 mths now. Then he also started me on a metabolism vitamin for it had also dropped to borderline. Not to mention the other 13 meds that I have to take each day. I feel for you. I have been fighting a terrible battle and sometimes the pain is so bad I just can't take it. I took the imuran ( chemo tablets) for 6 months but my immune level dropped too low so I couldn't stay on them. I couldn't take the bone medicine he had me on anymore because I started vomiting -blood (and it causes stomach bleeding so he didn't want to make it worse ) and they found that lupus was in my stomach and my esophophas has an upper hernia they cannot remove. He said I could only have a surgery if it was life threatening because my body will not heal. My immune level is suppose to be between 87 and 91 and mine dropped at one point to 62. So oh well. He was gonna let me take the injections at home once a day for bone loss but the medical board denied it because I hadn't taken the other medicine for 24 months. Crazy huh? I do hope you the best and I pray you don't have to go through what I am. I have had the lupus in my lungs 3 times already (thats worse than phneumonia). My bones hurt me so bad, my legs arms ankles shoulder blades. GOD LOVES YOU - WHEN YOU'VE DONE ALL YOU CAN DO = PRAISE HIS NAME.

[whyme63 in reply to 662mylupus]

I am so sorry for everything that you have been through and are going through:(( I had a test done for lupus 2 yrs.ago..my ANA came back positive. .But they told me it wasn't lupus. But I have so many of the symptoms. And I seem to be getting more and more symptoms as time goes on...Thanks for your reply and information. .Keep in touch.And God Bless you. .