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Biomarker for Diffuse Scleroderma skin has been discovered!


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Vitamin D


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#1 MaryFanPhilly

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Posted 01 June 2009 - 12:52 PM

Hello all my good buddies,

Just having had some routine blood work done, my doctor decided to check my vitamin D levels and found they were so low it was dangerous. I'm on a weekly regimen of a zillion IU's (50,000 I think) for the next several months. He said that it would take years of regular supplements to build up a decent level again.

Who knew! I was aware that vitamin D deficiencies were a sad sideline of avoiding sun exposure especially for us, but I thought a regular daily multi would cover me.

Now I know better. One more thing we need to keep up with, so be safe & check with your rheumatologist the next time s/he orders blood work!

Take care all!

Peace out!

Mary in Philly
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#2 purplelibrarian

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Posted 01 June 2009 - 01:34 PM

My holistic doctor checked my D levels and they were very low. I'm sorry but the conventional doctor has never checked my levels. Maybe I will ask next time. I take a D supplement now.

#3 Margaret

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Posted 01 June 2009 - 03:14 PM

Hi Mary ,

Gareth's Rheumatologist ran that blood test last fall for him and his was low, too. He's only taking 800 mg a day, though. Yours must have been WAY low!!!

Take care, Everyone.
Margaret

#4 barefut

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Posted 01 June 2009 - 04:40 PM

Thanks Mary,

I will ask for the test at my next check up!

#5 Sweet

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Posted 01 June 2009 - 06:34 PM

Hey Mary my friend!

I'm sorry to hear this. I think it was last year my rheumatologist told me about new research on the Vitamin D deficiency for sclero patients. So he checked mine, but I was fine. I hope you can remedy it quickly. :)
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#6 annkd

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Posted 02 June 2009 - 05:47 AM

Hi Mary - Funny you should mention it, but my primary care doctor just tested me for Vitamin D levels. I should know in a day or two. He, too, said that it was often found to be very low in scleroderma patients. Thanks for bringing it up! -Ann

#7 MaryFanPhilly

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Posted 02 June 2009 - 06:51 AM

Nice to see everyone, and glad to see that we're upping our awareness of this. I didn't know that there was an adult form of Rickets, my rheumatologist said vit D levels that are very low can cause a lot of joint and muscle pain. Vitamin D is interesting too since it's somehow linked to the immune system. Everything is attached to everything else, right? have a good day all~Mary
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#8 Peggy

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Posted 02 June 2009 - 01:27 PM

Thank you so much for bringing this up. I so hope I can remember to ask to have this tested at my next appointment. Wouldn't it be a wonder if this is what is causing my terrible muscle pain!??!!!!

Warm hugs,

Peggy

#9 Looking4answers

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Posted 03 June 2009 - 04:29 AM

I would also suggest that everyone has their Vitamin C checked as well. My body is not retaining any Vitamin C at all. The doctors have advised me that this leads to and/or attirbutes to nerve damage which I know alot of us have.

#10 kellyA

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Posted 03 June 2009 - 05:00 AM

I had mine checked a few months back and it was 16, so my doctor sent me out pills for a month, after that I took a D supplement and 2 months later more blood work revealed that is at 16 again, I received a copy of my bood work the other day (the doctor did not call me and say I needed pills again so I started taking supplements on my own.) I also have been sitting in the sun every chance I get without sunscreen so my bod absorbs the Vitamin D.

Kelly in NJ

#11 shennen0820

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Posted 03 June 2009 - 11:19 AM

Mine also is low and I have been taking supplement for 1 year and it was again low this year. My doctor suggested taking calcium with vitamin D, a vitamin D supplement, and also a multivitamin with vitamin D.
Shennen

#12 debonair susie

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Posted 04 June 2009 - 04:55 AM

Hi Mary and Everyone who has this common issue.

I, too have been running low in the "D dept"...for months. They've also had me on 50,000 each week and I'm awaiting the lab result...again.
I'm guessing that this will be something I'll be taking for the duration.
Special Hugs,

Susie Kraft
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#13 MaryFanPhilly

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Posted 04 June 2009 - 05:19 AM

Wow, this is very common, I'm surprised we haven't had more threads on it. I guess there are so many other pressing issues this is one that doesn't see the light of day that often (light of day.... get it? lolol, I crack myself up!)

Kelly and Susie, my level was all the way down to 8. He said to keep on the 50,000 for at least 4 to 6 months to bring those levels up. At least the capsule isn't too huge to swallow.

Looking, thanks for the C issue. I was told to avoid C so that's a fine line as well, getting enough without getting too much. Is anything ever easy for us??

It looks like we are finally moving across the country to California, so maybe I'll have some real sunshine to soak up. Son #1 is leaving tomorrow, when he finds a job and a place to live, I will follow with son #2. The east coast winters and humidity have done me in, and I've had it up to here with being a prisoner from December to May.

I might even be able to work again!

Everyone have a great day and a nice weekend.

Love, Mary in Philly
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#14 KATHY RAMSAY

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Posted 04 June 2009 - 07:45 AM

Hi Mary,
Your upbeat attitude is very inspiring to me. When are you moving to California? I live in Nevada and was just in San Francisco at UCSF Medical Center on Monday. Do you know if that is where you will be transfering your treatment too. They seem to be the research center for California.. Although I was not very impressed. Maybe you will have better luck than I.
Hope so. Good luck with your move! I know you will like the weather better.
warm {{ hugs}} from the west coast

#15 smac0719

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Posted 09 June 2009 - 11:20 AM

Hello all! I too experience low Vitamin D levels. Mine was extremely low in 2007 and I too was put on 50,000 iu's weekly. Last year my level was checked and it was low, but it wasn't been quite as low as the first year. I just received lab results today and my D level is low again at 13. I was tld tot ake 2,000 iu's daily.

I have not had my Vitamin C level checked. I will ask for it when I go back for labs in 3 months.
I may have Scleroderma, but Scleroderma doesn't have me!

#16 Shelley Ensz

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Posted 12 June 2009 - 10:19 AM

Also, a reminder that everyone who is taking Vitamin D supplements (hopefully on orders and under supervision of a doctor!) should have their levels tested regularly, as oral supplements can be toxic in too high of doses, and sometimes supplements need to be increased, as well.

In other words, it's not a do-it-yourself project.
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#17 CraigR

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Posted 22 June 2009 - 06:00 AM

There has been some very interesting research on Vitamin D by the University of California, San Diego. I saw a fascinating TV show put out by the university. Mainly pertains to cancer and diabetes. If interested, try entering "UCSD Vitamin D". Many sites should come up about the subject.

Craig

#18 shennen0820

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Posted 22 June 2009 - 02:29 PM

If you take calcium along with d, the D will help to regulate the absorption of calcium.
Shennen