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Raynaud's Association
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Topic Title: Vitamin D and autoimmune disease
Topic Summary: Do you know if you are getting enough Vitamin D?
Created On: 09/01/2009 11:20 AM
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 09/01/2009 11:20 AM
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Sarah

Posts: 2411
Joined: 10/16/2005

Six months ago my rheumatologist said she wanted to measure my Vitamin D level. Research has shown that individuals with a low Vitamin D level are at a greater risk of developing autoimmune disease. A blood test can indicate whether you need Vitamin D supplements.

If you would like to read more about Vitamin D and autoimmune disease the International Scleroderma Network has information on this subject.
Vitamin D Deficiency


Has anyone else had their Vitamin D tested?

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Secondary Raynaud's with a connective tissue disease
 09/01/2009 02:38 PM
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ma02127

Posts: 70
Joined: 07/11/2008

Hi Sarah

I was vitamin D deficient about 8 months ago. My levels are fine now after my rheumy gave me a prescription for Vit D. I also take a daily dose of Vit D with my 2000 IU Vitamin D3 in Wild Salmon Oil from Vital Choice. (Dr. Weil endorsed)
http://www.vitalchoice.com/vitamin_D3_180x2000IU

My primary care is monitoring my levels now that they are on the high end of normal.

My treatment required 3 months on the prescription because it took a while for my body to respond. I can't say how long it will take others.

good luck

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trish

Raynauds, Livedo Reticularis & Dermatographia (and Capricorn)
 09/02/2009 06:53 AM
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midgetmaid

Posts: 232
Joined: 01/30/2007

My endocrinologist tested my vit. D and found it to be in the bottom of the range. She told me to take 2000 IU daily. My level has risen enough that she is happy.

Dee

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raynaud's
Grave's disease
gluten sensitivity
 09/02/2009 10:01 PM
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wjhauber

Posts: 192
Joined: 04/03/2007

Be sure to read as much as you can about vitamin D in the context of your own deficiencies. My wife worked for 25 years as a lab technician for some internationally recognized researchers in calcium research...milk fever in cows...is one example. Vitamin D is available in a variety of forms and various metabolites of Vitamin D are available.

For example, I use a topical cream for psoriasis, another autoimmune disease. Calcipotrene is a form of D25 (if I remember correctly), one of the metabolites that my wife's researchers studied. It does a great job of suppressing runaway skin growth in psoriasis. It is the only form of vitamin D that makes sense for my disease.

Some oral forms of vitamin D may not be relevant to you.

So, whatever you do, read as much as you can about vitamin D as it relates to your condition. Be sure that you are taking the right stuff!

For what it is worth, vitamin D that is generated by the sun is great for psoriasis. Most psoriasis patients have great results in the summer time. I am in the direct sun for an hour every day. This is great for vitamin D production. My psoriasis is doing great. I should relapse during winter. Some doctors say that oral vitamin D won't help. So, I will be working on my topical creams over the winter.

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Wayne

primary raynauds diagnosed in Jan 2007
 09/03/2009 08:35 AM
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Sarah

Posts: 2411
Joined: 10/16/2005

My vitamin D level was 32ng/mL the first time it was tested. Anything over 30ng/mL is recommended for bone health.
Rheum told me at my last appointment to increase vitamin D to 2,000 IU because research has shown 2,000 IU is safe and my total vitamin D is on the low end of acceptable. lI will continue to be tested periodically.

Vitamin D deficiency and heart disease Link

Lupus, vitamin D linked by Oklahoma scientists Link

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Secondary Raynaud's with a connective tissue disease

Edited: 09/23/2009 at 07:40 AM by Sarah
 09/03/2009 12:07 PM
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ma02127

Posts: 70
Joined: 07/11/2008

I went to an endocrinologist yesterday. Although I won't have test results back for a couple of weeks, she stressed the importance of Vit D, calcium and magnesium. 2000 IU is her recommendation. 1500 mg Calcium citrate, divided into two doses and taken with food.

I had been good about Vit D but I was kind of sloppy with taking Calcium. I am 45 and osteoporosis does not run in my family so I thought I was ok. Now I know there are other reasons to take it regularly.

BTW - I am a pale Irish woman and recent studies have found that pale Europeans, especially women, do not absorb Vit D as well as others. My Dad had a melanoma so I really need to stay out of the sun.

And so the fight for good health rages on...

good luck!

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trish

Raynauds, Livedo Reticularis & Dermatographia (and Capricorn)
 09/04/2009 07:27 AM
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midgetmaid

Posts: 232
Joined: 01/30/2007

Hi Trish,

I take the supps. you mentioned, plus fish oil capsules for dry eye. My mother had melanoma, her brother died from it, and I've had a mole biopsy that showed pre-cancerous changes, so I avoid the sun like the plague.

Vitamin D is extra important for those of us who have to severely limit sun exposure.

Dee

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raynaud's
Grave's disease
gluten sensitivity
 09/05/2009 07:52 AM
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denise

Posts: 8
Joined: 05/16/2007

I was tested for Vitamin D about a year ago, and just retested last month. A year ago, it was fine, but this month, I got a level of 13, with below 20 being a deficiency. I would never have guessed that this could change so rapidly, with no change to diet or sun exposure. I will be taking prescription Vit D 50, 000 IU weekly for 12 weeks and also 1000 IU daily. So, even if you've tested normal in the past, you may want to include this in your yearly bloodwork.
 09/23/2009 07:48 AM
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Sarah

Posts: 2411
Joined: 10/16/2005

Vitamin D Deficiency and Insufficiency in 2 Independent Cohorts of Patients with Systemic Sclerosis Link

Conclusion Vitamin D deficiency was very common in the 2 systemic sclerosis populations, independent of geographic origin and vitamin D supplementation. This suggests that common vitamin D supplementation does not correct the deficiency in systemic sclerosis patients, and that a higher dose is probably needed, especially in those with high inflammatory activity or severe disease.

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Secondary Raynaud's with a connective tissue disease
 04/16/2012 02:20 PM
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2sleepy

Posts: 6
Joined: 10/28/2011

I am 65 have had primary raynaud's for less than one year. I had a complete workup done for autoimmune disorders and everything came back negative. My vitamin D level is 9 which is very, very low. I've been prescribed 50k units of D3 for 16 weeks, I've been taking the vitamin D for one month but it hasn't improved my raynaud's symptoms
 04/19/2012 10:32 AM
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MountainRose

Posts: 14
Joined: 03/07/2012

I am 38 and just had my vitamin D tested. The normal range is 30-80 and I was a 20! So needless to say I am on 2000 IU daily!

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Warmest wishes (pun intended )
MountainRose
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