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Message |
ananas84
Member
Username: Ananas84
Post Number: 2
Registered: 02-2011
| | Posted on Sunday, April 10, 2011 - 10:34 am: | 
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Hi all!
I know there are multiple topics here about Prograf, but I figured I would still start a new one -sorry about that :D
I'm 9 months post liver transplant (and splenectomy), and my drug regimen includes 125mg ciclosporin twice a day, 500mg Cellcept twice a day and 8mg prednisone in the mornings. Two months ago, when asking about switching to tacro, I was told I would most likely stay on ciclosporin. I'm not sure what has changed in the past 2 months, but now we are considering switching to tacro after all. It would be either Prograf or Advagraf I reckon.
What worries me are the side effects, obviously, even though I'm not a huge fan of ciclosporin either!! I was also previously told that tacro is so new compared to ciclosporin that the long term results are not as well-known yet. But from what I've gathered, it has pretty much replaced ciclosporin in the States?? (i myself am from Finland  )
The idea would be to put me on tacro, keep Cellcept and also for now keep Medrol as well. 8mg of Medrol a day is a bit too much, but now that we're changing the regimen my doctors are a bit hesitant weaning me off prednisone the same time. But apparently their goal is to get me off Medrol by summer.
I guess what I would like to know is if drug regimens vary depending on what caused the transplant..? And also what are the most severe/common side effects of tacro (and if there's a clear indication of why some people get different side effects??) I understand that kidney issues and being more prone to skin cancer etc are problems with both ciclosporin and tacro, but what about other issues?? I do not have a previous condition, I've always been relatively fit and healthy. My transplant and splenectomy were due to an acute liver failure. Even now I'm in an extremely good shape given that I'm only 9 months post transplant. I'm 27 years old and have been into sports my entire life so that might help My doctors seem to think that since I am young and in a good shape, I would prob not face issues such as diabetes and hair loss when switching to tacro.
Are there other younger transplant persons here who have had acute liver failure? I would love to know what your drug regimens are these days and how well your body has handled to drugs!! Cellcept doesn't cause any problems and the only side effects I've noticed with prednisone are bruises and somewhat thinner skin. Ciclosporin has been the worst for me so far so in that sense I am ok with switching it to tacro - reckon it can't get any worse lol. BUT it's still a new drug to me, hence my hesitation/anxiousness.
I would appreciate any info about tacro and the combination of this drug + other immunosupressants. I'm going back to my hospital next week and if my liver counts haven't improved (they are slightly too high but nothing alarming yet), we'll do a biopsy to rule out rejection and then probably try switching to tacro. I don't think I'm rejecting and my doctors don't seem to be worried about it either. My ALT is 87 and CyA is 350 which is quite high - two weeks ago my ALT was still 17 and Cya was around 150. This is why they don't think I'm rejecting - rather that I might be having problems with ciclosporin.
Sorry for the long message.. Looking forward to hearing any thoughts and feelings about the issue!
Pinja |
Jack R
Forum Leader
Username: Jack_r
Post Number: 418
Registered: 08-2010
| | Posted on Sunday, April 10, 2011 - 11:31 am: |
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Hello Pinja.
Congratulations on your transplant.
Not being a Liver recipient I can only address some of your questions:
- Here in the States protocols will differ, generally for each organ, certainly by Transplant Center, and further compounded by the recipients other health issues (if any) and even weight (i.e. heavier people need, at times, higher doses of a particular drug). Having traded emails with a Heart Transplant (in England) it is a sure thing that protocols differ from Europe, Asia, etc.,
- in the States our Approval, for new drugs, is very tightly controlled and often some of the drugs are first released in Europe given our extremely lenghty approval process put in place by our Federal Drug Admistration.
- when reading about a drug side effects always be aware that they generally list every possible know side-effect although some may affect only 1 in 10,000.
- I've been of Prograf and Cellcept since 10/2004. The drugs can be hard on the kidney and stomach for which I take blood tests to check my creatinine level, prograf level (to much can be toxic - same as many other drugs) every two to three months.
- My Transplant Center, Johns Hopkins University, has been using Prograf for a very long time and they feel there are less side affects then it's predecessor - I know three Hearts Transplant (not from Johns Hopkins) who were done in the late 90's and thus pre-prograf and have had lower leg muscle atrophy side effect issues.
- regarding skin cancer:- yes we are receptive to getting it not from the drug though. When your immune system is suppressed the skin cells, already damaged by the sun { when we are children or young adults} has a chance to surface. Even more so when one is fair-skinned and outdoor active. As a young person (now 65) I was always in the sun and take, as coached by my Transplant Team, the following precautions:
- visit a dermatologist twice a year, use a SPF35+ sunscreen and use a wide brim hat that covers my ears and neck ( a number of long time Heart Transplants have a piece of their upper ear missing given they didn't know in those days or choose not to listen- looks like someone took a bite out of it)
Please remember you are still in your first year and your confidence level is still in the building process.
I suggest you ask your Support Team why they want to switch you and, given they have gotten you this far, listen to them but you always have the option to say no.
Have a nice day.
Cardiac history going back to 1993. Heart Transplant received in Oct. 2004. Interesting first year and have been very physically active ever since. I currently am pro-active with the SE PA. Gift of Life and a member of Johns Hopkins patient administered Heart Transplant Foundation.
Exercise - look around you and don't tell me you can't -Blog |
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Hostess Meagan
Forum Leader
Username: Newheart14
Post Number: 1849
Registered: 01-2009
| | Posted on Sunday, April 10, 2011 - 12:55 pm: |
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Hi Pinja,
Welcome. I was wondering if you had a chance to check out our library. We have information on various things including medications. Just click on the link below and scroll down a little way until you find drug information. You will find information on prograf (tacrolimus) and other immunosupressant drugs:
http://www.transplantbuddies.org/library/library.php
Hope this helps.
Forum Leader
Heart-Liver Transplant - February 14, 2008
Toronto General Hospital, Toronto, Canada
Idiopathic dilated cardiomyopathy 1991 and CHF
- Most of the important things in the world have been accomplished by people who have kept trying when there seemed to be no hope at all - Dale Carnegie
- Bumps in the road can sometimes be mountains, so I have learned to climb mountains - Meagan
Meagan's Blog |
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papillonbleu
Forum Leader
Username: Papillonbleu
Post Number: 1958
Registered: 10-2007
| | Posted on Monday, April 11, 2011 - 08:39 am: |
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Dear Pinja,
Welcome! I have been on Prograf ever since I had my transplant more than five years ago. I was on the steroid Medrol for about a year or so afterward, but now all I take is Prograf, 2mg twice a day. The main side effect that I have noticed is some tremor in my hands which has gotten much better with time and is usually just barely noticeable. I have heard that Prograf can possibly be nephrotoxic, but my kidneys have been okay so far according to labs. It may have had a part in my developing peripheral neuropathy in my feet but that also may have developed from my surgery and the long recovery I had in the ICU due to developing a complication afterward. This though is just my experience, and each person reacts differently to each medication. I have heard from others that had trouble with hair loss on Prograf, but I have not noticed this, but rather the opposite which may be due to the fact that my hair was in really bad shape before my transplant due to malnutrition and could only go forward. Overall Prograf has worked well for me, and I have been fortunate in not having any major episodes of rejection. I did receive a liver as a part of my transplant, but it was one of six that I received. I hope that your transition to Prograf will go well for you. Many hugs and best of wishes.
Bobbiejo
Forum Leader-Multivisceral
dx: GERD 1995, gastroparesis 2002, pseudo-obstruction of the bowel 2004
multivisceral transplant, 6 organs, 10/06/05
University of Miami/Jackson Memorial Hospital
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