Transplant People: Your truth about Anti-Rejection Drugs and Effects

[Deanne]

I begged to be allowed to discontinue prednisone. They were going to let me at my 1-year anniversary, but they also require a 1-year biopsy. It showed inflammation, so they told me I have to keep taking it, forever. Later, they said they're actually starting to put people back on prednisone because they're seeing better long-term survival rates. I still want off it, but gave up asking. My right hip has been hurting for about a month.

[DialysisGoneFOREVER]

Weaning off Prednisone can be DEADLY. My first transplant I was weaned off if after 5 years yet soon after my creatinine shot up and I LOST the kidney!

I went to a BRAINDEAD hospital that didn't keep up with the latest studies. Something that even some nephrologists don't know is your body can get really used to Prednisone so if you stop taking it you could lose your kidney!

My 2nd hospital knew better and only gave me Prednisone the first 4 or 5 days and then stopped. Now 6 months later they said I have PERFECT labs with a 1.34 creatinine! I take Astafraf & Prograf with ZERO side effects.

But I'm in my 40s. As I get older I might get side effects. But it's INFINITELY better than needing a machine to live!! 

[Simon Dog]

My right hip has been hurting for about a month.

Get that checked out, with an MRI if insurance will go for it.  It smells like avascular necrosis.

[Athena]

This really is a very interesting and informative thread. The same question that hounds you K&S is one that many of us constantly wonder about, as well. I wonder how long does a patient generally have in terms of years on PD? From what I've heard it could be a number of years.

[kickingandscreaming]

I wonder how long does a patient generally have in terms of years on PD? From what I've heard it could be a number of years.

I think the average is 3-5 years, but if you get peritonitis, that can shorten the peritoneum's life span.  There is also the risk of EPS.  Of course, some make it to 8 years.  Lots of variables.

[Athena]

I wonder how long does a patient generally have in terms of years on PD? From what I've heard it could be a number of years.

I think the average is 3-5 years, but if you get peritonitis, that can shorten the peritoneum's life span.  There is also the risk of EPS.  Of course, some make it to 8 years.  Lots of variables.

Having several more years to go potentially is so much better than having an immediate pressing problem to resolve. (It's pretty much what I think I've got to be quite honest before I have to go through the 'pre-emptive' transplant that my neph has mentioned in the past. Once the eGFR hits the 20 mark, I believe he said).

How does one reduce the risk of peridonitis?

And what exactly is EPS?

There are always a lot of variables to have to consider.

I have now started to believe in pure luck as well!

[kickingandscreaming]

http://www.pdiconnect.com/content/27/Supplement_2/S289.full   EPS

Peritonitis can be avoided with scrupulously good and clean technique when connecting and disconnecting (mostly.) And some luck.  It can be avoided.

[coravh]

http://www.pdiconnect.com/content/27/Supplement_2/S289.full   EPS

Peritonitis can be avoided with scrupulously good and clean technique when connecting and disconnecting (mostly.) And some luck.  It can be avoided.

I've known (locally and in person, not online) 7 people on PD who have had peritonitis. And each and every one of them was able to tell me exactly what head-smacking mistake they had made that caused them to get it. We've all been there once in a while. Keep in mind that between these folks, they had a total of about 30 years of being on PD, so it's not that frequent a thing.

[Michelle2016]

Here are my tx experience with the drugs.

Hand tremor, and headache: disappeared over the years.
Weight gain: lost extra weight after exercises and eat healthy food.
Hair loss: stopped after few years.
High BP: get controlled after BP med, no salt diets, exercises.
Osteoporosis: due to many years of kidney disease and prednisone . Taking Fosamax   and exercises.
Weak immune system (very low white blood cells, BK virus and CMV virus, fever, joint pain): Doctor cut my Cellcepts , immune systems go back normal again.

Thanks for the tx kidney, I can have a 'normal' life.

[Fabkiwi06]

This thread is so helpful and assuring. I'm waiting to hear back on the final results of my potential live donors, and this is constantly on my mind. I know the transplant is better than the dialysis, and I'm bound to experience at least some unpleasant side effects from the meds, and it's assuring to see that for the most part the effects are manageable.

In fact, the first question I asked in my transplant consultation was how long would they want to keep me on Prednisone - and thankfully my transplant center is one that tries to get you off it as soon as they can.

Are you going to Centennial Tx center in Nashville?

Sorry to totally skip this the first time I read this thread... I'm at the St. Thomas in Nashville. Centennial is temporarily not doing transplants and wasn't an option for me. My neph (who is awesome) said that both Vandy and St. Thomas were great, but if she had to send a family member to one she'd pick St. Thomas... so I figured that was good enough for me!


I'm set to get my transplant Jan/Feb. I wish they'd confirm the date so I can get a sit down and actually get the full details of what to expect.

[kellyt]

I received a living kidney transplant in 2008 from my sis-in-law.  I am currently on Prograf 2/1, but started off at 4/4.  That is the only transplant drug I'm on.  Now, I'm on a few other medications for BP, cholesterol, etc., but I stopped the Celcept maybe 5 years ago and I stopped my Prednisone after 1 1/2 years.  My experience has been great.  I've not been sick one day due to my transplant.  No flu, infections, viruses, etc.  I get seasonal allergies, but they are no worse than they were pre-transplant.  I can say that once in 2014 I didn't feel well.  Just tired and weak.  I literally slept for 4 days.  When I did get up to use the restroom all I knew is that I didn't want to de-hydrate so I was drinking bottles and bottles of water that my husband would leave by the bed.  I would take my meds at the appropriate times and then crash again.  On the 4th day I forced myself to sit up and move.  I contacted my renal doctor and he ran some tests.  It seems that during that time my Prograf level was either really high or really low.  I can't remember which.  He did some switch up on the Prograf and everything was fine.

I have four cats and had a dog.  I clean litter boxes and such.  I worked my retail business (popcorn) at the Alamodome in San Antonio dealing with lots of people, money, etc. and I've never had any issues.  Blessed for sure.  I don't take that for granted.  I do wash hands regularly.  If I know someone is sick I avoid them.  I stay away from buffets. blah, blah, blah  All the stuff they talk about not doing.  I keep my fingers out of my mouth and eyes.

The only "effects" I would say I've had is my hair has changed, texture wise.  I have linked it to Prograf, as that's when the change started happening.  But not 100% sure it's the cause.  I've gained weight since transplant and have had the most difficult time trying to get it off.  Also, could be age and lifestyle.  Otherwise, no effects or issues with me.