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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 whirlway

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Posted 11 February 2007 - 09:18 PM

Went to the rheumatologist on Wed. The visit was good, nothing alarming. He did mention that I could possibly be deficient in Vitamin D. He pushed all the right sore spots, and said that I needed to get yet another lab, to see if I was deficient. He wouldn't say what he would do if I was, but that he would do something. So......has anyone else ever been told they need more vitamin d? I get some in my multi-vitamin, some in the calcium that I take and I also take a D supplement.
He said there was a study done last year that supported the fact that a lot of sclero patients were deficient in D, and if that is corrected, some of the joint and muscle pain would subside. Just wondering if anyone else has heard this or jnot.
Thanks.
~whirlway


#2 Heidi

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Posted 12 February 2007 - 02:39 AM

Hi Whirlway,

I remember Sherill posting some news articles about the link between Vitamin D and Scleroderma. Here are a couple of links you might find helpful/interesting: Mounting evidence for vitamin D as an environmental factor affecting autoimmune disease prevalence.


Sunlight and vitamin D for bone health and prevention of autoimmune diseases, cancers, and cardiovascular disease.

Vitamin D status, 1,25-dihydroxyvitamin D3, and the immune system

Warm wishes,
Heidi

#3 jlf

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Posted 12 February 2007 - 06:17 AM

Hi Whirlway,

I can't keep vitamin D, I'm currently on my 3 round of high dose Vit. D. It is taken 1 pill per week for 6 weeks. I take Ergocalifertol (sp?) 50,000u. My level goes up while I'm on it - then goes right back down. When my rheumatologist. took the first level he said I was seriously deficient. I also have gastroparesis and thyroid involvement, both of these can cause the problem. Taking the vit. D will make you feel better.

Hope this helps and have a good day.
JLF

#4 Sweet

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Posted 12 February 2007 - 07:16 AM

Hey Whirlway, I knew your appt was coming so I've been wondering how it went. My primary care physician told me I was deficient in Vit D. However she treats most everything with diet, so we did a bit of switching of that. I was pleasantly surprised actually that your rheumatologist even brought up vitamins!!! He has told me that he doesn't believe in them and thinks I'm wasting my time and money taking them. So maybe he's changing his tune! That's a good link Heidi gave so, take a look at that. Also, send me an email pr PM and let me know any other details hehehe *wink* (you know what I'm talking about) that I should know about.

I'm sorry that you have so many sore spots though. I wonder what lab he actually did. When you find out results if you are comfortable sharing please do!

Much love to you my friend.
Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#5 Jordan's Mommy

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Posted 12 February 2007 - 02:31 PM

My daughter's dermatologist and rheumatologist had her on topical vitamin D cream to help soften her skin. I can't possibly believe that she was vitamin D deficient though, because she was a milk piggie as a toddler. Her dermatologist did tell me though that she need SMALL exposure to sunlight (roughly 15 minutes daily without sunscreen) to get natural vitamin d. Hope this helps!

Jennifer

#6 barefut

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Posted 12 February 2007 - 07:18 PM

Wow guys,

This is all something I've never heard before. Thanks for bringing it up and thanks for the links.

I can't imagine me being deficient with as much milk as I drink and as much sun as I get (when the sun shines in the Northwest)

Anyway, I'll be doing some reading....keep us posted and

Thanks again,
Barefut

#7 R'egene

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Posted 12 February 2007 - 07:30 PM

Hey all,

While were on the subject I was told that milk makes the sclero worse. From what you all say that doesn’t sound right. I don’t understand why my rheumatologist says I shouldn’t drink it or anything high in vitamin D. Is it me or maybe he doesn’t know what he’s talking about. He doesn’t seem to know much about sclero anyway. What do you think?

#8 Guest_Sherrill_*

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Posted 12 February 2007 - 08:11 PM

Hi all,

There's a lot about Vitamin D now on the internet, and particularly in relation to it's role in autoimmune disease. The main site has a section on this under: Causes of Scleroderma: Vitamin D Deficiency

I am not a doctor, but from what I understand the liver is important in metabolizing Vitamin D. The most common method of getting enough Vitamin D is from sunshine on bare skin. It is also available in a very limited variety of foods. In both these sources the vitamin needs to go first to the liver, and then to the kidneys, where it is changed into the active version which the body can use. It is also a fat soluble vitamin, as opposed to water soluble like Vitamin C, and most of the B complex vitamins are. For this reason alone it is not a good idea to take Vitamin D supplements without consulting your doctor about it. Because it is fat soluble Vitamin D can be stored in the fat, and can build up to toxic levels, when taken as supplements. But apparently the Vitamin D received from the sunshine or food doesn't have this toxic effect.

About 2 years ago my renal specialist decided to test my vitamin D level. I turned out to have a severe deficiency! So I did a great deal of reading about this on the Net, and found some surprising things about it. As a result I really hassled my doctor through my dialysis nurse to give me vitamin D supplements, as he was humming and hawing about it. It took a while but he eventually gave them to me. Now when you have kidney failure it's not that easy to take vitamin D, or to get it from the sun on your skin, which is the usual method. This is because the vitamin D has to be turned into a special form which your body can use, and this first goes to the liver, and ultimately happens in the kidney. So of course if your kidneys don't work, you don't get vitamin D! The supplement they have to give to kidney failure patients with vitamin D deficiency is the same sort of vitamin D that eventually is produced by the kidneys. This is called a vitamin D hormone, is only available by prescription, and has to be closely monitored, or the calcium level in the blood becomes too high, and the body even starts to draw calcium from the bones if too much is given. This can lead to calcinosis too!! I only take one pill per month

This is only part of it of course, as it is a very complex happening, and involves the parathyroid glands too. But in my research I also discovered that they are finding a shortage of vitamin D seems to be implicated in autoimmune disease! They're even treating patients with it in certain cases. But I wouldn't advise anyone here to just rush out and buy vitamin D, as you can take too much of it if you don't know what you are doing, and the result would be a severe case of vitamin D toxicity.

But I only take one tablet once a month, so it's quite a strong med. I am also monitored closely every month for my calcium and phosphates levels, and once every 3 months for my parathyroid hormone levels. Vitamin D affects all these things, which just shows why you shouldn't blithely medicate yourself with it.

Now maybe everyone will be wanting their doctors to test them for Vitamin D levels! ohmy.gif

Warm hugs,



#9 janey

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Posted 14 February 2007 - 06:43 PM

Whirlway,
I've always drank lots of milk (now I've switched to soy), have spent hours upon hours in the sun, with well more than the required 20 minutes to give your necessary vitamin D - however, a recent bloodtest showed me dificient in Vitamin D. So I take supplements and it's back to low normal.
Big Hugs,
Janey

#10 Claudia-DR

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Posted 15 February 2007 - 04:28 AM

Hi everyone!

I think that the issue with milk is that it is a dairy product and some alternative doctors say that dairy food and autoimmune illnesses don't mix well. I happen to agree, but it's very hard to quit processed cheese...

I also agree that a little sun now and then is very good, not only for Vitamin D intake but also to help keep one's spirits up. Everytime I go to the beach or the pool my mood tends to improve...

Blessings,

Claudia

#11 scleroqueeny

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Posted 16 February 2007 - 07:54 AM

I have systematic Lupus too and staying in the sun is not good for me. I'll have to take a vitamin with D I wonder if that will help. Love this forum.

#12 Shelley Ensz

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Posted 19 February 2007 - 05:37 AM

Hi Whirlway,

Thank you for bringing up the topic of Vitamin D. As you can see, it plays a big role in autoimmunity.

In some parts of the world, even daily sunlight exposure without sunscreen doesn't help since the sun's rays are too dim for part of the year. I do full-spectrum light therapy to treat psoriasis. It helps a lot in reducing my psoriasis outbreaks and their severity. A handy side effect is that it also helps with vitamin D levels, and with normalizing sleep patterns. They are also used to treat seasonal affective disorder.

Full spectrum therapy lamps are different (stronger) than the regular full spectrum lamps, which are often sold in craft stores. It's something you may want to ask your doctor about.

My therapy lamp is just like a usual desk lamp, and I use it at full strength at my desk for one to two hours every morning (and dim it after that). By the way, it's not like those awful light panels that you see people staring into in ads. I could never stare at a bright light and have my eyes live to tell about it.

Anyway, its another option, on top of sun exposure, fortified foods, and pills...and especially when all of those combined just aren't enough.
Warm Hugs,

Shelley Ensz
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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.

#13 miocean

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Posted 20 February 2007 - 04:48 AM

It's interesting to me that this thread has come up at this time because I just found out in dialysis that I am Vitamin D deficient. They mentioned the parathyroid glands and will be giving me D with my treatment. I was surprised because I get a lot of sun, maybe it's because it is winter time and I'm not getting so much now. It's amazing how many people are deficient.
ISN Artist

#14 debonair susie

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Posted 20 February 2007 - 09:59 AM

Hi whirlway and all!

Again, a lot of good information, as a result of your thread!

I'm like a cat, in that I love the sun... I really gravitate toward it every chance I get! Not only does it brighten the spirit... as Claudia mentioned it does for her)... it also helps with my raynauds, as well as my psoriasis.
Shelley, a while back, I posted that my Scleroderma and Psoriasis are arch enemies. .. The sun really does wonders for my Psoriasis, yet seems to anger the Sclero. When I asked my rheumatologist about what I should do... she just suggested, "Do whatever feels the best:. So... the sun wins! (I enjoy being outside on beautiful sunny days too much )!

Heidi and Sherrill, you put forth good information on this topic, BTW! :rolleyes:

Hugs, Susie
Special Hugs,

Susie Kraft
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#15 Guest_Sherrill_*

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Posted 20 February 2007 - 03:05 PM

Hi miocean,

Yes those of us particularly who are on dialysis can expect to be Vitamin D deficient. As I said in my earlier post on this thread.......

When you have kidney failure it's not that easy to take vitamin D, or to get it from the sun on your skin, which is the usual method. This is because the vitamin D has to be turned into a special form which your body can use, and this first goes to the liver, and ultimately is processed in the kidney. So of course if your kidneys don't work, you don't get vitamin D! The supplement they have to give to kidney failure patients with vitamin D deficiency is the same sort of vitamin D that eventually is produced by the kidneys. This is called a vitamin D hormone, is only available by prescription, and has to be closely monitored, or the calcium level in the blood becomes too high, and the body even starts to draw calcium from the bones if too much is given. This can lead to calcinosis too!!

Warm hugs,