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Avatar universal

Vitamin D

Hi all.  This place sure looks different from the last time I was here...

I was wondering if any of you had had the opportunity to have your blood levels of vitamin d tested, and if so how many of you were deficient?

I ask because I sort of took myself off the cellcept I was on and only continued with 5 mg of prednisone for almost a year.  Of course I progressively felt worse until I went back to my primary and asked for a refferal to a different GI doc.  She went ahead and took some blood because I was complaining of severe joint pain (which I've had forever) and I guess she did not know it was a symptom of AIH (my old hepatologist didn't either).  Come to find out I was vitamin d deficient.  I was put on a prescription vitamin d dose.  By the time I got to see the new Doc I had been on the "D" for about 5 weeks.  He of course did a liver panel.  The results of the liver panel were really better than I had expected, with only modestly elevated ALT.  One other really good thing that had happened in that time is that my joint pain had all but gone.  It has now been another few weeks and I can really say I do not have any joint pain.

I would like to know if anyone else here has had anything similiar happen.  I did a little reading and it appears there is quite a bit of research going on now about the affects of vitamin d on both the cause and treatment of autoimmune disorders.  Of course my AIH has not been cured and since I messed up my treatment I have to face that but I am really excited by the research and also my experience with vitamin d.
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Avatar universal
I am on 5 mg of prednisone and cellcept as well.  Can I ask why you stopped taking the cellcept?  My Dr is trying to lower me off of the prednisone all together and just stay on the cellcept.  I was on 10 mg of pred 4 weeks ago, down to 7.5 mg 2 weeks ago and just got reduced to 5 mg.  My numbers are staying in great shape, but I am still holding steady on the cellcept.  I have been battling AIH for a year and a half.  Nothing has worked w/the prednisone accept for cellcept.  Since then my numbers have been great.  The ast and alt are 19.  They were in the 1700's...Its been a long battle.  As far as the aching I have had nothing.  Have they looked in to you having lupus as well?  I know a lot of people that have spoken on this forum have AIH and lupus.  I do not, but It could be a consideration especially w/the joint issue.  Haven't heard a thing about the vitamin d and AIH.  Interesting!
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Avatar universal
Hi.  My reason for quitting the cellcept had to do with the medication warnings and a family history of numerous types of cancer (with several recents deaths). That and the fact that none of the recommended testing was being done by my doc to monitor for any potential problems.  I really hesitate to mention that here because it is only my paranoia that made me quit.  I don't wish to make anyone think that I think the drug will cause anything... but I am and have always been an overly cautious person.  So there you have it...

I believe lupus has been ruled out for me.  Joint pain is also a symptom of AIH and I was having terrible flares of it prior to going on the vitamin d but now it is essentially gone.  I is interesting.  There are some studies going on now for autoimmune diseases and vitamin d so I hope the results are positive.
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Avatar universal
Very interesting stuff w/the Vitamin D.  Glad lupus has been ruled out and I hope the joint pain goes away.
Don't at all hesitate to do what you think you need to.  If you feel that you need to stop  the cellcept then that is what you do.  However the risks really do outway what could happen if your liver numbers continue to rise.  But you know your body best.  That is my feeling...Does your Dr test your blood every month?  What are your current numbers?  I am heading to 2.5 mg of prednisone tomorrow and as soon as I get low enough they are going to start trying to "ween" the cellcept as well.  I guess that would be a good thing.  I'll have to do some research on it as well.  But I like you hate meds and am very cautious of them....I just want it all out of my system!!!!
Take care of yourself and watch your liver numbers....
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