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Medullary Sponge Kidney Disease (MSK) Community
515 Members
Avatar universal

Any success with vitamin D

Hi,   I have just joined this community and this is my first post. I was diagnosed 2004-ish.

Reading the notes here it seems that it could be caused by a vitamin D deficiency.

I wondered if anyone had been successfully treated (or at least the symptoms alleviated)
with vitamin D and how long the treatment took before any effect was noticed?

Thanks.
7 Responses
587521 tn?1238508522
I up'd my daily intake from 1,000 i.u. to 2,500 i.u.  I have to admit that I'm happier.  But I don't think I am taking enough to make a difference with my pain.
168348 tn?1379360675
COMMUNITY LEADER
I think the Vit D is caused by the MSK, not the MSK by the VIt D problems .. the chicken and the egg thing!

My Vit D was severely low at 9 .. with 32-100 being the normal.

After 8 weeks (4 of which were 100,000 iu's a week vs. 50,000 iu's) I am finally at 32 .. BUT it's now been 2 weeks back down to the 50,000iu's and I *think* my symptoms are beginning to come back and they include some pings and pangs in the kidney area.

WELCOME.

Do you have stones?

C~
Avatar universal
Yes I had and still have calcium oxylate stones. Lovely.

My understanding of vitamin D is that the body produces its own through interaction with sunlight and can also ingest a limited amount through food.   (This may explain the fact that my symptoms have been noticeably worse since moving from the very sunny southern Europe to northern Europe!!)

Could someone please explain 1,000 IU per day?

How do these compare to micrograms?  I found a table which equates 25 micrograms = 1,000 IU.     Is that correct?

Thanks and apologies if these questions are simple and somewhat naive.
168348 tn?1379360675
COMMUNITY LEADER
Geez, I actually don't know ... hoping somebody else may know.  Of course we can ask our pharmacist to be sure.  Not naive at all ..... we are all still learning . .I've been at this for 3 yrs since my diagnosis but I suspect much longer.

C~
Avatar universal
From reading the followng article it seems that too much vitamin D can be as bad for your kidneys are too little.

http://www.emedicinehealth.com/script/main/art.asp?articlekey=78080

It seems that safe low level exposure to sunlight is a better solution as you cannot overdose on vitamin D that is manufactured by your own skin.  Unfortunately not a year around option here. :(

OK I will be my own guinea pig for a simple vitamin D test. I will try 12.5 μg (mcg) twice per day and see how it goes.
168348 tn?1379360675
COMMUNITY LEADER
Vitamin D also helps absorb magnesium and magnesium they say for many of us MSKer's with stones is something good to be on, too.

Since I had a melanoma removed 2yrs ago the docs think since I use more sunscreen and stay out of the sun moreso than before, that's the reason why my vitamin d is so low.  And when you think about it ... the makeup these days contains SPF so we don't absorb it even in the winter on trips to the food store!

C~
489228 tn?1291535054
I really thought my GP had me on way too low a dose, however I was very very low and am now only slightly below normal.  (I haven't gotten a copy of the report yet.)  He
was concerned because of the risk of increasing my stones with too much.

I have been on 400 IU's 2x a day, I can say I feel some better, not a complete cure for me
but I do feel better then I did!

Shelly
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