Vitamin D for scleroderma

Went through the discussion on vitamin D. Contained much good info and some misinformation.
Vit. D comes primarily from the sun and only a small percentage of people get enough sun in this and many other countries. The labs list 30 to 100 ng. as normal levels (75 to 250 nmol. for those of you outside the U.S.) however in more natural conditions near the equator the levels is closer to 100 ng. than 30 ng. Studies have shown that people with scleroderma and other connective tissue diseases tend to have low levels and the theory, backed by research, is that the very low levels make it easier for the body to produce abnormal antibodies that cause these diseases in people who are prone to it for whatever reason, (won't get into theories on causes of scleroderma). It's already been proven that to help prevent the widespread condition osteoporosis a level over 40 ng.
is important; recent studies give evidence to prevent a large % of breast cancer in women a level of over 47 ng. is needed. 25-hydroxyvit. D levels are easily obtained in a blood test that in the US are covered by insurance in most cases with the proper accurate code. (I've of various problems with getting a level in some other countries). In order to get an overdose, a very very massive dose of vitamin D would be required, a dose that would never be recommended by a physician. If it helps to put this post in perspective, I am a physician who since 2005 has tested 6,000 patients for vit. D levels and treated the over 4500 who are low (below 32 ng). Since scleroderma is fortunately a rare disease and I am not a rheumatologist, I have treated only one person with scleroderma (severe) for vit. D deficiency and have seen quite a dramatic subjective and objective improvement over 2 years. I've searched the medical literature and there are some studies on vit D and the connection to scleroderma, but not much research has been done on this one particular aspect. Best wishes to all who suffer from this terrible illness who read this.

By DebbiA
Reply 3075861
May 19, 2012 at 9:03 am
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Thank-you for sharing this information. I have VitD issue for four years. Latest level is at 17.4 and I have been taking prescription Vitamin D (50,000 U weekly) for years. My doctor has suggested I take two pills a week now (100,000 u) but I was worried about taking that much.

I am now making a conscience effort to spend at least 30 minutes outside a day as I heard this can help. I wonder if there is anything else that can get my level into a normal range.

By rcbaker200
Reply 3075938
May 19, 2012 at 9:51 am
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Your doctor is very knowledgeable. The blood level gives a totally accurate picture of the vitamin D stores. So he/she is suggesting you increase the dose to get the level up. He will probably repeat the level in a number of months, perhaps 6. At 100,000 units a week that works out to 14,000 units a day.

As you know, sunlight does make vitamin D, however that depends on several factors, latitude, sunlight that day, amount of skin exposed, even if a person takes a shower soon after sun exposure there is a study to suggest some of the vitamin D can be washed off the skin before absorption (and I've seen a case like this). So it's not a simple matter.

As far as why someone with connective tissue diseases has an exceptionally low level in spite of 7000 units a day (50,000 units a week), there are some good theories on that also. But the important level is to treat the deficiency and get a level that you want it at.

By sweaters
Reply 3076138
May 19, 2012 at 11:35 am
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I really appreciate your willingness to tackle the vitamin D issue as it relates to connective tissue diseases. I however, am one of the few that goes against conventional thinking. I tested low for vitamin D (D2 <4, D3:9) and was given a rx for 50,000 1x/week. Within hours I developed symptoms of toxicity/hypercalcemia (headache, excessive thirst, loss of appetite). Over the next few weeks, I also developed possible pancreatitis (at the time it was assumed to be a gall-bladder attack, brought on by a sudden 10 lb drop in weight) and a known but relatively dormant food sensitity to sulfites came back with a vengeance. My PCP at the time told me it wasn't possible to have such a reaction to vitamin D (even though many of the symptoms I had were listed on the monograph) and advised me to continue, so I completed the 8-weeks with the rx, then switched to 2,000 iu/day. My levels increased to 43 (D2:21, D3:22) and I was barely functional. A new PCP told me to cut back to 1,000 iu/day and I noticed a change for the better, and based on that, I stopped taking any D supplements. A year later, I was diagnosed with CREST, although I'd had Raynaud's for over 15 years prior to that. I started taking Plaquenil and the effect it had on me was almost immediate - so I did some research and found that plaquenil comptetes with calcitriol and is used to correct vitamin D dysregulation.
Most of the literature that I've found regarding vitamin D dysregulation is related sarcoidosis (which I do not have as far as I know), but it's not unheard in others. At this time, my vitamin D levels seem to be stable in the upper 20's and I'm feeling better now than I have felt in many years (the final key for me was to start treatment through a ND for Hashimoto's as well, something my PCP would not address, despite high antibody levels).

By DaisyDo
Reply 3076292
May 19, 2012 at 1:09 pm
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Rcbaker wrote this article showing values in terms of ng, I think someone should point out that this is not the same unit as the ui unit in which Vitamin D supplements are listed. 100 ng equals .1 mcg. And .1 mcg of Vitamin D3 (cholcalciferol) converts to 4 iu according to the converter at http://www.robert-forbes.com/resources/vitaminconverter.html . So either the converter is wrong, or rcbaker's figures or units are wrong. I haven't seen on the market any D3 supplements anywhere near as small as 4 iu!

Perhaps Rcbaker's figures were not referring to D3, but rather to some other form of D. D2? But, no wait, according to the same converter I showed above, .1 mcg of D2 (ergocalciferol) also coverts to 4 iu. Keep in mind that many people have to take 1,500 iu daily. So something's not right here!

By sweaters
Reply 3076363 · In reply to 3076292 by DaisyDo
May 19, 2012 at 2:00 pm
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Daisydo- Where is the mention of supplement values in the original post? All of my blood tests were reported out in ng/ml - I don't see a direct correlation between blood levels and the D2 or D3 that is ingested - where the concentration is listed in IU's - so I think you're trying to compare apples and oranges.

By rcbaker200
Reply 3076535 · In reply to 3076292 by DaisyDo
May 19, 2012 at 3:37 pm
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I was all set to post something but I see that sweaters has already gotten to the point. Thank you. You put if very well, comparing apples and oranges. There was no mistake made in my post.

By DaisyDo
Reply 3076711 · In reply to 3076363 by sweaters
May 19, 2012 at 5:30 pm
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Sweaters, I must have been off today. Obviously I hadn't read the post closely enough to realize rcbaker was talking about blood levels rather than supplement amounts. Thanks for helping to clarify.

By rcbaker200
Reply 3082222 · In reply to 3079557 by YukonNicole
May 22, 2012 at 6:58 am
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Vitamin D drops are a lot more expensive and used primarily for children and some adults who can't swallow capsules, even though vitamin D capsules are very small. I have come across some people since 2005 who are given about 1000 units and sometimes even more for a vitamin D deficiency, and then when they don't get a very big response, they have been told they must not be absorbing it well. One person even was advised to have gastrointestinal studies. This idea has probably come from the model of pernicious anemia, which is B12 deficiency usually in the elderly when they can't absorb vitamin B12 from the stomach because of the loss of intrinsic factor. However there simply isn't any evidence, not one study that suggests that it is lack of vitamin D absorption from food or supplements that is a problem. One other thing, if someone is going to take drops, they should be very careful about calculating the dose since a decimal point error can lead to too large an amount being taken.
According to all the Vit D dosage studies that have been done, it simply takes a lot more vitamin D to get a desirable level. There is some individual variability; excess body weight is well known to make it harder to raise the Vit D level since fat cells sequester the vitamin D and it isn't measured or active. Also published studies (and reinforced for me by seeing it in so many people), in the presence a variety of connective tissue diseases AND cancer the vitamin D level is resistant to increasing. One theory is that the human body is using more vitamin D to fight the illness, but that's a theory that's kind of impossible to prove.

By JosieMay
Reply 3082733
May 22, 2012 at 10:37 am
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As I've mentioned here before, I too had a Vitamin D Deficiency....and also what appeared to be some sub-q tightening and discoloration on my forearms. (I was prescribed 50,000u per week, which didn't do well for me and I ended up now taking 2000u a day, my levels are now at 36). When visiting my dermatologist, she suggested I try Calcipotriene ointment, which is a synthetic Vitamin D3 ointment. I put a tiny bit on those areas once a day.
I've had no bad effects, and I would say that my skin has softened and the discoloration has not worsened and is perhaps a bit better. Of course this is anecdotal and specific to me.
It's something to think about and it does raise Vitamin D levels to a point.

By sweaters
Reply 3083464 · In reply to 3075861 by DebbiA
May 22, 2012 at 3:11 pm
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DebbiA - has your doctor tested your PTH and 1,25-OH D levels? Assuming you are not on prednisone or plaquenil, your vit D levels should have improved with the dose of D2 that you have been taking - which points to another mechanism besides simple deficiency as a possible explanation for your continued deficiency.
1,25-OH D (calcitriol) is the active hormone - if it is too high, your D2/D3 levels (the normal test) will be low as your body attempts to normalize the calcitriol.

By rcbaker200
Reply 3083766 · In reply to 3083464 by sweaters
May 22, 2012 at 5:25 pm
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Regarding vitamin D dose, I've seen many people on 50,000 units a week (7000 units a day average) who don't raise their vitamin D level to even above 32 ng. Not the majority, but a significant number. I've already mentioned some theories on some illnesses not only possibly being promoted by low vitamin D, but causing the vitamin D to get lower as the human body uses it to fight the inflammation or disease process. Only a theory that has been written about. How do you prove something like that.
Calcipotriene is more like activated vitamin D (1-25-dihydroxy vit. D), and according to the internet source I just looked up, 6% plus minus 3% is absorbed if applied to psoriasis, and 5% if applied to normal skin.
The subject of calicitriol blood levels is complex. a small percentage of people having low vitamin D for a long time will develop an elevated PTH. I can't find much in studies, but a primary care doctor I spoke to drew PTH levels on EVERY patient who had a low vitamin D (very expensivek I don't suggest it as a routine test ), In 6 months after treating with vitamin D, he rechecked the PTH levels and practically all of the high PTH's were back to normal, with a minority being much improved but not quite normal.
Calcitriol levels are usually obtained if someone has hyperparathyroidism, or if they've had their parathyroids removed, or sometimes in people on dialysis or near dialysis.

By DaisyDo
Reply 3083850 · In reply to 3083766 by rcbaker200
May 22, 2012 at 6:07 pm
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RCBalker, yes, like you say, I had elevated PTH along with my low blood D. Now that my blood D is back to the normal level with vitamin D supplementation, I wonder if I should have the PTH rechecked.

By rcbaker200
Reply 3084228 · In reply to 3083850 by DaisyDo
May 22, 2012 at 9:07 pm
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well you can ask your doctor his/her opinion. Like I said, practically all the PTH values were back to normal with the doctor's patients who told me about his experience as long as the vitamin D is treated with significant doses, and the level goes up to a pretty good level. Your doctor may say it's not necessary.

By funattic
Reply 3084860
May 23, 2012 at 6:19 am
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I've been taking about 6000 i.u. of Vitamine D3 but felt much better with the prescription my Dr. Gave me. That origionally started out at 3000MG. Maybe there IS something too the differences in prescription vs. OC. Hmm.

By rcbaker200
Reply 3084931 · In reply to 3084860 by funattic
May 23, 2012 at 7:27 am
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Not sure what you mean by the prescription the doctor gave you. You say it originally started out as 3000 mg (assume you mean units). The only prescription vitamin D (vitamin D2) that I think is available is 50,000 units, which is frequently started at as once a week.
There have been some claims that actually the otc Vitamin D3 is more effective at raising the blood level. Other studies conflict with this and show there is no difference if one compares the same number of units. I haven't been able to detect a difference. I can't stress enough the individual variation in blood level responses. I've seen some obese patients go up very little with 5000 units a day, and I remember a 5'10" 18 year old boy who was 140 pounds and he started with a level in the teens and he had a great response to 5000 units a day within 6 months and he ended up with a lower dose for maintenance. The former response is common, the later response is one out of thousands over 8 years.

By rcbaker200
Reply 3084935
May 23, 2012 at 7:29 am
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Can someone help me with a question. Is it permissible to post a link to a free non-commercial no advertisement blog which contains a blog about scleroderma? I don't want to do anything that violates the terms of service.
Thanks.

By sweaters
Reply 3085636 · In reply to 3084935 by rcbaker200
May 23, 2012 at 12:13 pm
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Others have done it, so as far as I know, it is OK. Just don't try to post a site that sells miracle cures...

By June3443
Reply 3086260
May 23, 2012 at 4:28 pm
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Rcbaker200, iI think it is great to have a physician posting who is interested in helping us deal with this dreaded disease. My older brother who has crest SD takes 1000 iu D, 600 mg calcium and 3000 mg fish oil daily and 5000 iu d monthly. He has been on that dosage for quite some time. His primary care doctor is his prescribing doctor.

I would like to read the blog you mentioned.

By rcbaker200
Reply 3087436
May 24, 2012 at 5:05 am
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Case history, nothing more, nothing less, for those who are interested. I got the follow up on this individual only a few weeks ago.

http://robertbakermdhealthnewsletter.blogspot.com/2012/05/28-case-history-p artial-remission-of.html

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