Vitamin D

[dry2010]

Hi,
Just wondering what number in Vitamin D measurement you guys feel your best? Mine is 35 think that is why my joints are hurting.

Thanks,
Martha

[Jasper]

My Rheumatologist wants mine to be at least 40. She said, absolutely no lower than 40.

I like to keep mine in the 50s. My Rheumatologist is okay with that.

PS: When first tested in 2013 my Vit D level was 28 even though I was already taking 3,250 IU per day. My Rheumatologist prescribed 50,000 IU per week for a total of 9 months because it took a long time to get my level up to 40. I took both the 50,000 IU per day and the 3,250 per day that I had been taking.  After 9 months I dropped back to  9,250 IU per day and that has kept my level above 50. I do get my levels checked every year.

Each of us is different so you will have to find the correct dose for you in order to keep your Vit D level up. You will need to have your levels checked periodically so you know that you are getting enough Vit D, but not too much Vit D. Too much Vit D can be toxic.

[Deb 27]

dry, all I know is that mine was 13. I was taking the weekly 50,000 units. Now, I take 2,000 units a day. I feel so much better. I need to get my level checked. I think it makes a big difference, to be honest.

[Sharon]

According to every guideline I've come across you can safely take up to 10,000 IU per day.
According to the Coimbra Protocol what counts are especially the PTH levels, not only the Vit. D levels
and he believes all AI illnesses can be put into remission through Vit. D treatment.
He advocates using much higher doses since there is an absorbtion abnormality of Vit. D in AI illnesses.
However, you must be under a doctor's care and follow specific guidelines to follow his protocol safely.

I've been taking 10,000 IU daily for a few days now and it has really helped with my muscle and joint pain
as well as with my fatigue.
If this keeps up I may search for a doctor that is trained in the Coimbra Protocol to raise even further.

 

[hopeforall]

Interesting to see the comments from different Rheumatologists.
Mine was at 9 in 2013. I started taking 2000 IU then and it slowly improved to 16 in 2015 and 26 in 2016.
My current doctor's opinion was: "Most people have a Vit D deficiency. Continuing with 2000 IU should be good enough".

[cccourt1942]

We are the sjoldiers who put our heads, experiences, and diagnoses together to help others.  Sometimes I think  we need to help  the doctors who supposedly treat patients with Sjogren's....or expected Sjogren's.  and while I'm at it, I have heard the comment about everyone having low Vitamin D.

Hang in there,
Sjoldier c3

[hopeforall]

I was about to email my doctor requesting increase in my Vit D dosage.

I was looking around the web to see the side effects and I came across this interesting publication:

http://www.eurekalert.org/pub_releases/2009-04/arf-vdm040809.php

http://autoimmunityresearch.org/transcripts/ICA2008_Transcript_TomPerez.pdf


It essentially says that the Vit D supplements exacerbate the autoimmune condition and proposes an alternative approach which activates VDRs to regulate immune response.
No idea which research is correct though!

[Sharon]

Those are old articles.
Vit. D is now known to modulate the immune system and aid in AI illness as well as in many other conditions.
Read up on the Coimbra Protocol which takes it to an extreme with amazing results.

[Navigator]

I have had some Top Doctor rheumatologists and all concur that getting Vitamin D levels up over 40  should be a goal.  One said his patents that are over 65 do better should they contract lymphoma at some point.   I am around 50 after treatment like the others who have responded and then 2000 IU per day.   I have encouraged my daughters to take 2000IU  a day since we share the genetics that obviously can lead to AI disease.

[Jasper]

My Rheumatologist is the director of the lupus clinic at the U of MN. My Vit D level was 28 when I first saw her and that was when she told me it needed to be at least 40. She said that lower Vit D levels are associated with a higher incidence of Lymphoma in patients with Sjogren's.

Here is a link to a study that confirms the link between low Vit D level and higher risk of Lymphoma in Sjogren's patients:

http://www.ncbi.nlm.nih.gov/pubmed/22835660

And another article on Vit D stating that there is evidence that vitamin D is important in the initiation and propagation of a range of autoimmune diseases.

http://www.ncbi.nlm.nih.gov/pubmed/24467766

And another about low Vit D levels and dry eye:

http://www.ncbi.nlm.nih.gov/pubmed/26807908

And another:

http://bmcmedicine.biomedcentral.com/articles/10.1186/1741-7015-11-93


PS: Just thought I would add the section about low Vit D and Lymphoma and Peripheral Neuropathy from the last link above:

"Low levels of vitamin D are associated with neuropathy and lymphoma among patients with SS"

"The morbidity of SS is mainly determined by extraglandular disease and increased prevalence of lymphoma. Environmental and hormonal factors, such as vitamin D, may play a role in the pathogenic process and disease expression.

The levels of vitamin D and their association with manifestations of SS were studied in a large international multicenter cohort [81]. Vitamin D levels were determined in 176 patients with pSS and 163 matched healthy volunteers utilizing LIAISON chemiluminescent immunoassays (DiaSorin, Saluggia, Italy). Mean vitamin D levels were comparable between patients with SS and controls: 21.2 ? 9.4 ng/ml and 22.4 ? 10 ng/ml, respectively. Peripheral neuropathy was diagnosed in 23% of patients with SS and associated with lower vitamin D levels (18.6 ? 5.5 ng/ml vs 22.6 ? 8 ng/ml (P = 0.04)). Lymphoma was diagnosed in 4.3% of patients with SS, who had lower levels of vitamin D, 13.2 ? 6.25 ng/ml, compared to patients with SS without lymphoma (22 ? 8 ng/ml; P = 0.03). Other clinical and serological manifestations did not correlate with vitamin D status.

This study reported for the first time the presence of low vitamin D levels in patients with pSS with peripheral neuropathy. Overall, it seems that vitamin D deficiency may be a component in the pathogenesis of neuropathy in pSS, and may be used for monitoring and treatment of this condition [82, 83, 84, 85, 86, 87].

Patients with pSS are at increased risk for NH lymphoma compared to healthy populations [44]. While the relationship between vitamin D and the risk for lymphoma in pSS has not been reported previously, there is some evidence from case?control studies that low dietary intake of vitamin D is associated with an increased risk for NHL in the normal population [88, 89]. Vitamin D and its metabolites have been shown to have an antiproliferative effect on lymphoma cell lines and to attenuate their vitamin D receptor (VDR) expression [90].

Thus, low vitamin D levels may join low complements components and the presence of cryoglobulins in predicting eventual development of lymphoma in patients with SS.

Given the associations between hypovitaminosis D and severe complications of SS, it can be proposed that vitamin D supplementation should be given to every patient with SS."

[Lindabridge]

My new rheumy recently ordered a comprehensive battery of tests, one of which revealed that my Vitamin D level was 24.1, terribly low, despite my taking 2,000 UI daily.  I'm now taking 5,000 daily especially after reading these posts.  Do you think that having an AI disease makes your Vitamin D levels go even lower?  Does the body fail to metabolize it properly when someone has Sjogrens?

[Sharon]

Thanks for posting all those links Jasper.

Linda- you take safely take up to 10,000 IU without any extra measures.
Dr. Coimbra claims that indeed the cause of many AI issues stems from the fact that the body fails to absorb or metabolize
Vitamin D properly. This vitamin is actually a hormone which is vital for the immune system to function properly.

You can read more about Vitamin D and AI issues here:
http://www.vitamindprotocol.com/

Vitamin D specifically for arthritis and pain:
http://www.vitamindwiki.com/Overview+Rheumatoid+Arthritis+and+vitamin+D

[irish]

It has taken me about 5 years to get my vitamin D level up to the high 30's and my immunologist is thrilled with this. It is really hard to get this level up. I started on the 50 mgm weekly for some weeks and then ended up on the 2000 mgm daily.

At the rate I am going I will hit the jackpot number a few days before I die. lol It is like chasing a rainbow. Irish

[Sharon]

Irish- That's exactly why the Coimbra Protocol which advocates mega dosing of Vit. D exists!

[Carol101]

I am new to this forum and in the process of trying to solidify my diagnosis. We have ruled almost everything else out. I do not have positive antibodies, just Sicca symptoms and fatigue, which are terrible right now, and a positive ANA. It took forever to get an appointment with a rheumatologist. I can't get in until next month, I have seen 5 different specialists, which seems like standard for this diagnosis. I too have very low vitamin D and one of my doctor recently instructed me to take the supplement with a fatty meal, he said it helps with the absorption. I put olive oil in or on something or on days I don't want to be do healthy I use butter. I am trying to maintain my weight now I have had symptoms for 6 months and have lost 10 pounds.  I haven't had my level rechecked, but I hope it helps.