Does anyone experience the side-effect... - British Liver Trust

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Does anyone experience the side-effects associated with Tacrolimus and Mycophenolate?

ChrisKerrigan profile image
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ChrisKerrigan
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I am on both of these drugs, although on lower doses now than earlier on in my post transplant phase. Last year, the medics reduced Tacrolimus to 1 mg twice a day and increased MMF to 1 mg twice a day. This caused me to have diarrhea and fairly rapid weight loss (almost 1 stone) over a 4 week period. When my original regime of MMF was reinstated, this stopped and my weight returned to normal.

I also did go through a spell of itching during the early evening. This lasted abut 2 weeks and then stopped, although it recurs from time to time. I have no idea, however, if all of these events are related to the drug regime.

Hope this helps

ChrisKerrigan profile image
ChrisKerrigan in reply to

Thanks a lot for sharing Mike. If you don't mind me asking, for how long now have you been taking both of these medications? I guess my primary concern is that albeit my transplant was carried out seven years ago the dosage of Tacrolimus and Mycophenolate has always seemed comparatively high, at least with regards the case I have come across. For example, only until a year a go I was taking 3mg of Tacrolimus twice a day, with 1g of Mycophenolate twice daily (a staggering 70 pills a week!!) - now i am currently taking 2mg of T x2 daily and, until a couple of weeks ago, 500mg of M x2 daily (which now has been reverted to the original 1g x2 daily dose).

I can only conclude that perhaps the dosage inclined towards my disposition correlates to my age? I was 19 when I had the transplant (sero-neg Hepatitus) and 26 years old now. I had been suffering in silence for a ridiculous number of years but a pervading and augmenting insomnia has taken hold to a ridiculous degree, as have incredibly prominent hand tremors. All nicely extant in lieu of a general degenerative state of general health...

Does anyone have any insight or thoughts into my present stance???

in reply to ChrisKerrigan

Hi Chris

I have been on these meds since Dec 2011.The MMF dose should, of course, been 1g which was reduced to 750mg. Doses have been adjusted in the light of blood results (I still have tests about once every 4 months and always 1 month after a change in dose). I can't help think but first port of call is your specialist who is monitoring bloods. Sorry I can't be of more help.

Best wishes,

Mike

Ph1ldad profile image
Ph1ldad

For tachrolimus check out this site: nlm.nih.gov/medlineplus/dru...

and don't let it scare you too much !

The site for mycophenolate is:nlm.nih.gov/medlineplus/dru...

These sites are from theUS government's health site. I used to use them for toxicological surveys.

98percentoriginal profile image
98percentoriginal

I only take Tacrolimus prograf, and the only side effects I have are slightly blurred vision (particularly when exercising), and very, very vivid dreams all night.

Are you experiencing side effects, or are you asking because you are going to be prescribed these meds?

anne-marie50 profile image
anne-marie50

I too take both these meds. I'm 12 weeks post transplant and my doses change from week to week. I'm now on 2.5 Tacrolimus twice a day and 500mg 3 times a day of Mycophenolate. I suffer with itchy skin occasionally early evening and my liver consultant advised to take one Piriton allergy tablet when needed. I have lost my appetiate which has caused me to loose over a stone in weight but as I was over weight pre transplant the doctors don't seemed to concerned about it though they've prescribed me food supplement drinks again. I still get very tired but I think this is due to blood clotts I have suffered during transplant.

I don't know if my symtoms are linked with my medication but I do seem to have the same as yourself.

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