Vitamin D - a Cure for FSGS & CKD?

I have long suspected a deficiency of Vit D has caused problems for me personally. Like 99% of Americans, I had never had my serum D level checked (it's fast & easy). I took multivitamins with 400 IU or 100 IU or whatever of Vit D and paid no attention. Today, I have two artificial hips from total osteoarthritic degeneration, was facing work on my chronic left knee problem, and my Ortho told me to also get ready for some back surgery based upon X-rays he took when I told him I had back pain. Sometime early in that timespan, I was also diagnosed with FSGS (~5 years ago or so). Why am I telling you all this? It is all about Vitamin D.
If you look at the emergence of so many autoimmune diseases, cancers, and other illnesses and degenerations over the past century & a half, where are the common socio-cultural connections? Well, notice that a couple of centuries back, most Americans were in the fields, farming or ranching. SPF had not been invented yet. Sun poured down all day long. Today, most people are indoors, on a computer, particularly in the middle & Eastern portions of the country where cold winters force them inside. When they do go outside, many women (like my daughters) use SPF 50 sunblock to may sure they don't get the alligator skin of the summer sunworshippers of my generation. So, guess what? NO VITAMIN D!!!
Now for the good part. Based upon studies I found from clinical trials of high dosage (10,000 IU) vs. placebo in Australia & New Zealand, some 40% improvement in cartilage degeneration occurred with the Vit D group. This is remarkably high. So I started taking 5,000 IU a day (say 2-3,000 for a girl who weighs 100 lbs, or 1,000 for a 50 lb child). Within a week or two I no longer had back pain and no longer had the knee pain to the extent I had. I began testing my serum D level. I came up quite low (low 20's) despite the supplements, likely because of absorption difficulties common to FSGS. I upped the dosage to 7,000 IU, next month another test. Higher (29) but still low. I have now upped it to 10,000 IU and make certain I walk 30 min a day with enough skin exposure to get natural Vit D. Waiting on tests, but expect to be close to norm. In the mean time, I feel great, have to joint of back issues, and my FSGS issues seem better as well! Tests will show.
There is a Vit D post on this website (under the research/trials column) which documents the link between Vit D and FSGS. I STRONGLY encourage you to read it. This is a case of HUGE upside with no downside. Be careful not to overdose on Vit D. Like Vit A, too much of a good thing can be toxic or cause more kidney problems that they solve. But the toxicity limit is high (~85,000 IU for an adult, so maybe 10,000 - 40,000 for a child depending upon size/weight). Main point: Have your child (and you) tested for Vit D level. I would bet that 90% of you are low. If so, start taking Vit D.
One interesting sidebar: My daughter has also had chronic knee problems from jogging. At first she resisted taking D saying she was taking Glucosamine (like I do). But she started on 2,000, and results were relatively immediate and very positive, so she went to 4,000 and toady had no knee pain. She uses SPF 50.

Edited March 4, 2010 at 12:42 pm

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that seems very true............ i am going to ask my doctor to test me for vit. d deficiency. Isnt it bad to take vit D supplements without asking your doctor first? Can you get all the Vit D you need from the Sun without taking any vitamins?

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That was very interesting and helpful...I'll look into it...we live in Canada where the winter can dreary and rainy..I wonder if FSGS is more common in these types of climate??

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My Neph doc has me taking Calcitriol 0.25MCG Caps daily (Generic for> ROCALTROL 0.25MCG Cap).

He told me that because of my FSGS my body won't absorb Vit D the normal way thru sunlight and food.

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Sorry I forgot to mention on the previous post that he also told me that taking over the counter Vit D won't be absorbed either because of this disease, that's why he has me on the Calcitriol.

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thanks for that info, I didn't know this and I have being pumping my daughter with OTC Vitamin D..!!

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My 4 year old has MCD and her endocrinologist had her adrenal gland function tested as well as her calcium and vit.D. She tested fine except for a deficiency in vit. D. They have her on a 1000 iu.

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I just wait 10-15 minutes before I put on sunscreen when I'm outside

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Very interesting post! I have read that having FSGS will not absorb vit D. (I think from riverhipstr) in a previous post. Does anyone know if MCNS has the same effects and also will not absorb in the body? Is it only certain cases as we are also using over the counter Vit. D.

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Just saw this article about vitamin D, also have recently read that his is one theory for type 1 diabetes and other autoimmune diseases:

http://query.nytimes.com/gst/fullpage.html?res=9800EFD8143BF931A35751C0A966 9D8B63

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Dennis, I think you are on to something with the Vitamin D. MY GP has been keeping a close check on my D and I am taking 2,000 units a day of an over the counter Vit D. Both my parents who are in their late 80s have been told my their doctors to take D. I have encouraged by husband to take 1,000 units a day. I think it is really important and I think more doctors are looking at this too.

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Thank you Dennis, for all your useful information. My Nephrologist prescribed Hectorol for me. and recently, I also started taking 2000IU of vit D. We shall see how this bears out. :)
albin

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Just in case you are wondering, we had Andrew's workup by an endocronologist showed he was low in vitamin D. His value was a 6 and the nurse said they would like for it to be 20-100. He's starting on a prescription strength supplement. He has not getting much sun due to winter, being inside, and us not being diligent about multi-vitamin....just thought I would share what we've found.
Tommy

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The poor absorption of Vit D for people with FSFS is both right and wrong. As I mentioned in other posts, most Nephs are (unfortunately) not very good at this disease because it is a 1 out of 15,000 event. Here's the deal. FSGS obviously affects the glomeruli of the kidneys affecting absorption of many vitamins & minerals. But it does not mean they go completely unabsorbed. My Neph favors "pulse" Vit D where a person takes 50,000 IU (yep, you read that correctly) once a week for 4 weeks, then re-test. I favor daily Vit D3 dosing along the lines I described so I can vary it with sun exposure. The 1000 IU dosing is the accepted "legally safe" (not physically safe - you can go 50X that safely for some) dose most doctors will only recommend (lawsuits - OBAMA remember?) and will not impact most of us. But you will find it likely won't up your levels much. I take 5,000 - 10,000 IU per day depending upon sun exposure and my joint problems are now gone along with better Neph testing. (No, I don't work for a vitamin company and I have grad level science (chem) training!) Suggest you all read up on this one..

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Thanks for the info, my sister was just tested (she doesn't have fsgs) and was very low on the vit d she takes 50,000 once a month I believe. I have noticed since I started on a multi with vit d tha I'm not as cold as I once was and wonder if it will also help me this summer in my over heating problem.

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oh ya I didn't have the cold or overheating problems before I started taking all the drugs for fsgs

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Popsycle - The cold is likely anemia, another problem with FSGS. I take iron suppliments and do not get anemia any longer (I used to have to take EPO/Procrit for red blood cell production, but not since I started on the Iron tabs ~5 months ago).

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HEY - ANYONE out there with FSGS not taking Vit D suppliments, but who was tested for Vit D and did NOT turn up low?? I have not talked to anyone in that catagory yet, and as I continue to see the same correlation over and over, I beieve the relationship is very real. EVERYONE with this disease needs to get Vit D levels checked!

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