Replies to This Discussion

Permalink Reply by Hostess Risé on October 24, 2012 at 12:00pm

Hi Gabrielle

 

May I ask - have you contacted your transplant team about your questions?  Did your transplant team give you the blood tests? If so, they really need to be the ones to discuss this with.

 

I take Krill oil a few times per week and my vitamin D levels are low so I take a liquid that I prefer.  I try and take all my vitamins and minerals hours away from taking my drugs. 

 

PS: I wish my Vitamin D serum test was 60.  I would not want my level to be higher than that.

 

Tell us what your transplant team tells you.

Thank you

Rise'

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Permalink Reply by Hostess Risé on October 31, 2012 at 9:30pm

Please show us the research on vitamin D and cyclosporine. I am very interested.

 

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Permalink Reply by Ono on November 2, 2012 at 11:41pm

I'm on prograf not cyclosporin. I've taken fish oil and was told to take vitamin D and calcium by my hepatologist. He knows about my taking fish oil, and never commented on it.

The only thing I know we aren't supposed to take is grapefruit.

I'm three and a half years out and I eat anything and do anything without worries. Unless you're transplant was very recent, I wouldn't worry about the supplements. Just don't over do it, as you wouldn't want to over do it prior to your transplant either.

I agree with Hostess Rise, can you show us a link ??

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Permalink Reply by KO on November 20, 2012 at 12:17pm

I was on calcitriol for years along with multivitamins. All was well for about 10 years when my calcium levels began to show high and I developed calcification in my graft. So the Dr. stopped the calcitriol and the multivitamins.  Kind of a catch 22 as I have some early signs of bone loss. Bottom line though NO supplement goes in my mouth (or any OTC or prescription drug) until my Neph has approved it. If he is not available then I consult the transplant team.  Not worth the risk to the transplant to try something without knowing the latest info your team has available.  Info has changed over the years and your lab work is unique to you so there is not a one size fits all answer.

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Permalink Reply by Barbie on November 20, 2012 at 8:01pm

My nephrologist put on Vit D, 2000 units a day and I take 150 mg. cyclosporine in the morning and 125 mg. in the evening.   I am 20 yrs. post kidney transplant.  I have been taking Vit D for at least 5 years.  Talk to your specialist if you are worried about it.  Hope this helps, wishing you great health.

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Permalink Reply by Hostess Risé on November 21, 2012 at 10:39am

I am proud of you Gabrielle

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Permalink Reply by Shelly on January 25, 2013 at 1:34pm

My son only started on Vit D in the last year and he is now on Prograf instead of cyclosporine.  We did have an issue with cyclosporine when he was on it.  It wasn't caused by vit D though.  We were trying him on a new medication to help with his autism and it interfered with the absorption of his cyclosporine!  His level would be down, so we'd increase the dose, but it just never would come up.  Finally we stopped the other drug and then his cyclosporine levels were fine, but by the time he was in rejection (long story....he was only on 1/2 of the dose they wanted for CellCept due to side effects).

Did your doctor seem concerned about the level being low?  I know you can't have grapefruit with it, but not really sure what other drugs/foods interact with cyclosporine.  Is that the only change that has happened with your meds/diet?

Will they check levels again soon?  My son's doctors don't usually change his drug doses unless it's been low or high for two blood tests (usually they do them 4-7 days apart).  There can be lab error or who knows what.  Sometimes the second test and all of them from then on are totally fine without even changing his dose.

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Permalink Reply by Armand on February 23, 2013 at 4:36pm

Hi Gabrielle,

There is no problem with D3 (the only D you should take, 2 is pretty worthless) with Prograf. Cyclo..not sure. But I keep my level what I consider to be high normal, and that is around 70. 100 is the upper limit of normal, so maybe you misunderstood? 60 is fine. I wish mine had been 60 right after transplant, as they are now showing that 75% or so of lung patients who have acute rejection are also D deficient. Mine was like 27, and I did have two minimal rejection episodes. All good now, 4 1/2 years later!

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Permalink Reply by Hemoslidder on February 24, 2013 at 7:46am

My friend I am into 17 years kidney transplant and no problem with Vitamin D or D3 . Have been taking D3 for 8 plus years and one and a half year on Krill oil, no problems.  I hope this helps but remember every one is different .  :0)   

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Permalink Reply by Hostess Risé on February 24, 2013 at 4:00pm

I take Krill oil for five years and love it

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