I hate myfortic

[bette1]

I'm almost 2 years post transplant and I am still having stomach issues with this drug.  At this point the center says just deal with the side effects and take imodium over the counter for any problems.  I know that there is really nothing to do and I am blessed to have a working kidney, but this sucks. 

I go to the bathroom three of four times in the morning before breakfast. UGH!

[cariad]

Oh man, bette, and myfortic is supposed to be the more tolerable one.

I don't believe that patients should ever, EVER be told to "just deal" with a side effect. I assume you've already tried CellCept? There are other drugs in that class. They don't want to risk switching you, probably because you have stable function, but then that decision should be made by you not them.

I know it's expensive, but try to find a good probiotic and take it every day. I would go to Whole Foods or a local health store and ask for recommendations. I don't know about supplements, but I know if you try a food from Whole Foods and do not like it, they will take the remainder back and refund your money. There are also yogurts that are supposed to help (Activia).

[bette1]

I tried CellCept and it was much worse.  I didn't know a probiotic would help.  I'm up for anything at this point.  I eat regular yogurt but it does not seem to make a big difference, but I'm getting the kind my kid likes and thats not the healthiest type.  Thanks for the suggestions.

I haven't pushed to get off of it because this problem is still much better than being on dialysis, and I am not willing to risk my transplant.  I just wish that the transplant docs would be a bit more sensitive to the side effects that come along with some of these meds.  I think they see us a a kidney and not a whole person.

[mcclane]

I'm on myfortic as well (on my first transplant they put me on cellcept).  I thought myfortic and cellcept are in the same family of anti rejection meds ?  I could be wrong.

I had digestive distress when I first was put on the 3 anti rejection meds - prednisone, tacrolimus, and myfortic - but that has subsided quite abit, though on occassion it does flare up again.  I've been on pantoloc for over 10 years to protect the stomach, and it has worked well. 

Do you take your anti rejection meds on an empty stomach ?  I make it a point to eat something before taking any of my current meds, especially prednisone, it does help.

[coravh]

I was on cellcept for the first month and if you'll excuse me being graphic, I was "raw" down there. I switched to myfortic and things got a lot better. I am currently like you, spending mornings in the bathroom and eating a lot of immodium (I buy the big family pack at Costco). It's much better for me than the cellcept and all my labs have been stable. It's a drag, but I think it's the best I'm going to get. Sorry I can't be more help, but I can really sympathize.

Cora

[Chris]

I was on the CellCept and switched to Myfortic till basically I had severe problems from it. I was told I was one of te are ones who develops an allergic reaction to these drugs after being on it for many years. It usually happens to newly transplanted patients I was told. The bathroom problem became so severe and unhealthy that it led to a 2 week hospital stay and finally switched to a different med. Now that I am on Rapamune, my renal numbers have been way better than they ever where with the CellCept/Myfortic. The G.I. doctor believes that the drug is the reason behind the start of chron's disease (luckily controlled with more meds).
 
 would suggest pushing the matter of possibly changing the med, even for a short time that can be monitored with labs. I don't like the idea of "having to deal with it" when there are options out there.

[Brightsky69]

I feel ya!! I am on myfortic and still have stomach issues. My transplant is 1 year 5 months and still I am having issues. Granted it's not as bad as it was....maybe I am getting use to it. I still have "blow outs"  each morning but at least now I don't get the major cramps. My first transplant I used Cellcept and it gave me black tarry stools...not good.

I found that if I keep really hydrated it helps plus a probotic did help me out some.  Hang in there and keep drinking!!! 

[monrein]

http://www.medscape.com/viewarticle/721308

Here's a link to some medical info about the probiotic.  I take a multi-strain probiotic once a day. 

[Sunny]

I was having a lot of problems with diarrhea on myfortic too. I have partially solved the problem by methodically taking out food one by one and waiting to see how I responded each time. This has taken me many months of experimentation. I reduced "Greek" yogurt to a few times per week instead of eating it everyday which caused too much of the probiotic flora in my digestive tract. I also stopped eating fresh green salads since I couldn't get them clean enough. (I might try using an iodine solution like they use in Peru to clean greens sometime in the future). Try seeing if specific foods trigger diarrhea by taking just one food item at a time out of your diet to see if things change for the better. This has really helped me. Since we're stuck with the Myfortic, might as well see if there are food triggers.