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Posted 4/6/2011 1:28 PM (GMT 0)
Anyone who is post transplant:

Mike is facing a potential surgery...whenever...soon?

He is now begun to think about his life AFTER.

He will still have Hep C, of course, but...

Question today:  what transplant med are YOU taking and what are the sides?

Do you still take lactulose, xifaxan?

Do you still need the same amount of diuretics you needed before transplant?  Or at all.

What are the side effects that are most bothersome to you...he wants not to be disappointed...to be "ready."

Thanks,

Carol for Mike

Posted 4/6/2011 2:51 PM (GMT 0)
Hi Carol,
I take as minimal a dose of prograf (immune suppressant med) as is possible. Prograf is very powerful stuff. I take 1 mg., twice a day. At first they had me taking 3 mg., twice a day, plus 1,000 mg. of cellcept, twice a day. When I was taking the higher doses, there were side effects, numbness in my toes and shaky hands. Neither are bothering me any more now that the doses have been lowered. I am lucky, as many transplant patients take higher doses and are subject to the above side effects. Other than the prograf, I take an antibiotic (Bactrim) to prevent infections, and omeprasole to protect my stomach. I do take a couple of other meds, but they have nothing to do with the transplant. I no longer need lactulose, xifaxin, or any diuretics. As a matter of fact, I now take less meds, with less noticeable effects than before my transplant. All the meds I was taking to help prop up my (old) failing liver were eradicated by receiving a new liver. There are other possible side effects from the prograf; it can raise your cholesterol, make one more likely to get skin cancer and some folks become diabetic from it. As always, my theory is that it's better to maybe have a problem from side effects, than to die from not taking the meds. There are several other choices if prograf doesn't work for you. At first they had me taking several other meds to be on the safe side (anti virals) , but within 6 months, they were phased out.
Posted 4/6/2011 3:35 PM (GMT 0)
Hi Carol,

My husband, Ron, is 8 weeks post transplant. He had neurological problems (really didn't know where he was, problems walking, speaking, eating, involuntary spasms of hands, arms and legs) with Prograf and Cyclosporine - after 10 days was changed to Rapamune. Rapamune has been a great drug (although it has been known to cause blood clots - Ron's scheduled for an ultrasound tomorrow - for swollen left foot)......but all in all, Ron's been doing great - returned to a normal schedule 7 weeks post transplant. Ron no longer takes Lactalose or any diuretics.

This is his morning and evening regime:

Morning:
Rapamune
Cellcept
Bactrim (3 months)
Valcyte (6 months)
Urso Forte
Lopressor (slows his heartbeat due to meds)
Cardura (lowers his blood pressure due to meds)
Nexium
Aspirin
Multivitamin

Evening:
Cellcept
Urso Forte
Lopressor
Posted 4/6/2011 4:57 PM (GMT 0)

The Rapamune and Prograf...are they steroids?  With a possible transplant looming, I'm concerned...as I have bad reactions to steroids.

Hugs,

Connie

Posted 4/6/2011 6:35 PM (GMT 0)
None of the anti rejection meds are composed of steroids. Except of course, prednisone, which isn't an anti rejection med, though it's sometimes needed, especially in the early days after a liver transplant. Another friend I know from a transplant forum had a kidney transplant (in CA.) and her doctors never gave her prednisone. Like my transplant team, they're not fans of steroids either.
Posted 4/6/2011 8:14 PM (GMT 0)
David, that's good to know.  I also think it may be problematic getting a liver the correct size for me.  They would need a child's liver or split an adult one between me and someone else. 

Hugs,

Connie

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