Back with another question..

[tiredandthirsty]

hello all,

hope you are all doing great and keep on doing great forever. 

i have a quick question after a chat with my neph who was at the clinic on monday.  just a quick background, i had my first transplant a while ago and i am back on the list for another one.  and i have been on D for about 7 months now.  i was on the prograf/prednisone regimen and i am still on the same, .5 mg twice a day for prograf and 10 mg every other day for prednisone.  my neph suggested i should consider stopping prograf and pred now that i am so far into d.  he says i am exposing myself to unnecessary chemotherapy (that word sort of scared me a bit there to be honest).  he says it's not doing much now for you. so my question to you folks is, is there any reason/advantage of staying on?  getting off? is anyone still taking prograf while on D?  does it help extend the residual function whatever is left?

any tips, suggestions, advice, help is supremely appreciated.  thank you very much in advance.  i

[justme15]

I'm in a similar situation.  My transplant is failing and I have  been on PD for a few weeks now.  I have stopped the mycophenolate completely, and today was instructed to decreased my prograf from 12 mg daily to 8 mg.  My neph said in a few months we may decrease the prednisone.  I had the same question as you about preserving my residual function.  He said that reducing the prograf may actually be good because it will reduce the nephrotoxic traits of prograf.  he said it may also help my blood pressure to drop.  He has slowly taken me off the immunosuppressants because he doesn't want the transplant to completely reject.  so I'm not sure if he will decrease the prograf anymore, but I think he may decrease the prednisone later.

he said you have to weigh the risks versus benefits.  are you having any side effects from the immunosuppressants?

[jeannea]

When my first transplant failed, they stopped Prograf and CellCept. I stayed on 5 mg of prednisone. That was to prevent any problem with the first kidney and also I'd been on prednisone so long my adrenal gland (only one left) prob doesn't work any more.

However, mine was a little unusual because one of the problems I had at the time of failure was a prograf overdose. They had to stop it.

But I don't believe that staying on prograf really helps your kidney function.

[tiredandthirsty]

hi folks.

thanks a lot for your responses.  much appreciated.

i actually don't have any side effects from prograf.  except for hair thinning.  and originally i used to be on cyclosporine/predinose/azathiaprine regimen until about 3 years ago when i was switched to prograf/prednisone.  the hair thinning started then.  so not sure how much toxicity will affect just three years into the regimen.  i know cyclosporine might have probably caused some damage.

at this point i am taking so little prograf (.5mg twice a day) and prednisone (10 mg every other day), don't know if i should continue with it or let go.  plus, i have been taking these meds for SO LONG, i am mentally finding it difficult to let go. it's sort of i am attached or the final acceptance that my kidney is done.  which i know but i don't really want to hear. hope this makes sense. 

this is exactly what i am trying to do, weigh risks versus benefits.  if one of the benefits to losing prograf will be that i get my hair back, I WILL TAKE IT :-)

[MightyMike]

If your kidney has failed and your on dialysis then there is no point being on any immune suppressants.  The prednisone is good to stay on to help with inflammation and to keep your transplanted kidney from becoming septic but after a while you won't need to be on that either.  I remained on 5mg of prednisone for about 6 months to a year and now I'm done with it and haven't had any drawbacks I still urinate and been on dialysis 3 years this time.  Best wishes.

[noahvale]

^

[Rerun]

Go slow getting off Prednisone.  If you are on 10 mg every other day I'd go 8mg every other day for a couple of weeks and then 7mg every other day etc.   If you start feeling ill you are coming off too fast.  Really S l o w.

[MommyChick]

You def. want to talk to you doctor before just stopping Prednisone & take it slow.
When I had to stop that medicine, they had to wean me off slowly & I do remember having to check in with a doctor every so many weeks, but I was on that medicine for 9.5 years & I remember them being worried if I stopped cold turkey my body might have a bad reaction. Hopefully the medicine has become better then it used to be back then
Good Luck!

[Riki]

When I started dialysis, my doctor took me off all antirejection medication.  I was on cyclosporin and cellcept at the time.  About a year after, I started feeling run down and very fatigued.  I'd actually get tired while chewing, and would have to stop to take a break.  It took about a month, which included a 2 week hospital stay, to figure out what was going on.  My body was actually rejecting my transplanted kidney again, even though it had very little function.  They put me on a high dose of prednisone, then slowly weened me off over a 2 month period.  My residual function declined rapidly after that.  I'd think twice about stopping.  Even a small dose may fool the immune system into leaving the kidney alone.

[cassandra]

I agree with all of the above. When mine failed, I had to stop Tacrolimus out right (its actually bad for your kidney) but stayed on a maintenance dose of Pred (used it then 25 years) I could only completely stop Pred after about 5 years of 2.5 mg a day.

Good luck Cas

[tiredandthirsty]

hi all.

hope everyone is having a grand thanksgiving without any problems.  and it stays that way for everyone forever. 

once again, thank you all for your responses.  i really appreciate you taking the time to respond and share your knowledge/experiences.

i do plan to take it up with my neph when i go see him in January.  but i wanted to collect some questions/experiences before i go see him.  i have been taking prednisone for a LONG time now.  so i am totally petrified of what will happen if i stop taking it.  especially after reading all your stories.  and i have this bad habit of "googling" things.  which i just did and as usual, it was NOT helpful.     i am doing decent on dialysis (knock on wood) and i do not want to change anything right now.  you know?  why fix anything when it's not broken type of thing.  with God's grace, i have been getting good labs, managed my fluids well so far, and i seem to have considerable amount of energy (nothing compared to what i had before but considerably well compared to before start of dialysis).  although my hernias seem to have gotten bigger.  so i don't want to add on any additional problems if i can help it. 

i will take it up with the neph and let you all know what he says.  thank you once again for all your great help. 

take care, be safe, and hope you all feel great and stay healthy forever.