Side effects of medication?

[Des]

Please give me some feedback on the side effects of the transplant meds.

I have read what is in the book but I would like to hear from first hand experiences.

(it scares me a bit)

[RichardMEL]

Gee this is a tough one. It seems to be different for everyone, and definitely depends on what you're on - and again some people are on different stuff.

The other thing is, you read the little brochures with the meds about the side effects etc and some are similar for various meds (like Cyclosporin and Cellcept) and then again they can be contradictary - like the Prednisolone doco says you COULD get anorexia and lose weight.. next line.. you get hungry and GAIN weight. Or you could have constipation OR the other way ... like they are having a shot each way so if something happens you can blame the med!! but when some of them seem to have the same sorts of listed effects it's hard to know which med is doing it.

Anyway the only real side effects I have felt so far are the odd hand shakes and kind of "locking up" of hands (quite painful) on the higher doses of cyclosporin. Since I've come down I haven't had it (knock on wood). With the preds, the damn appetite increase is killing me, and I'm retaining fluid a bit and put on weight... not too happy about that, but my dose should be lowered next week YAY!!!

can't say I've had any bad things from cellcept that I know, or the other stuff I'm on.

[-Lady Noir-]

Like Richard said, it really depends on the person and the drug, even the amount.

Mikes main side-affects are shaky hands, moon face [cheeks slighty puffy], blurry vision [hard to concentrate on words], faster hair growth & weight gain.

The most amazing thing about transplants is, it gives you a new lease on life. No dialysis! Yes, the medication has it's side affects, but they are minor compared to the other benefits!

[carol1987]

I have been very lucky so far... not really many side effects... some fluctuation in the first weeks between Constipation/diarrhea   ... Some heartburn but an occasional Prilosec stops it... a slight moon face ( i had a round face to begin with LOL) and increased appetite..

I feel better than I have in years and am up to walking an hour/ approx 3 miles for exercise  7 weeks after TX

[lou]

Hi Des, think i have also been fairy lucky so far. I am on Prenisolone and Cyclosporin and haven't really noticed anything. Occasionally hands feel a bit shaky, but not very often. Haven't put on any weight/moon face or any of the other possible things you hear.

I am going down the route of just not reading the side effects anymore!  To be honest they have to put everything on there don't they but everyone is different and hopefully you wont have too many problems. x x

[Chris]

After reading about the side effects, that was a mistake in two aspects. One, is kinda made me leary of having a transplant and two, those that scared the crap out of me never happened.
 
My first experiences are from CellCept and Prograf. diarrhea, trembling hands, being in light (outside) made me dizzy.
 
Now that I am on Rapamune, small dose of Prednisone (weaning off after6 months) I bruise easily, stopping from bleeding takes longer. However I have not gotten the moon face or appetite from prednisone.
 
I have notice memoryproblems that have been determined to be due to medications, bone problems and arthritis due to a combination of diabetes, dialysis, and transplant medications, and insomnia (which I like). I now get C-Diff real easy when on antibiotics.
 
All in all even with he problems I have had (and there have been a few), I would get a trasplant again and not worry to much about the side effects. You just never know what is going to happen and it could happen down the road in a few years as I found out with CellCept/ Myfortic.