Tapering off Prednisone

[charee]

I'm on 10mg aday , thats the lowest i will go as i am high risk , so i'll take the moon face so i can pee

[kellyt]

I saw my regular nephrologist today and he said he would try to get me off the Prednisone, but ti will take a while.  I'm fine with that.  I also told him I understood if he wanted me to stay on a low dose permanently.

I do, however, get to stop the Bactim and Valcyte next month!  Yeah!   Two meds gone!   

[charee]

I
I do, however, get to stop the Bactim and Valcyte next month!  Yeah!   Two meds gone!   

I have just stopped those two as well

[pelagia]

keeping the kidney... 

[Falkenbach]

Ah yes, Bactrim and Valcyte. I was glad to get rid of those as well. They kept putting me back on Valcyte, as I kept showing possible CMV in my bloods for a while there apparently. I went into hospital for a week with a nasty gastro bug a few months after transplant, but until they confirmed it was gastro (that took absolute days of testing and re-testing), they treated me for CMV. Anyway, all was well in the long run.

[rocker]

I do, however, get to stop the Bactim and Valcyte next month!  Yeah!   Two meds gone!   

Ok, since DH had his transplant (LRD, 2/6) about fifteen years ago, I can tell you the protocols from back then...

As of last year, when the transplant began to fail, he was on 7.5 mg pred daily, as well as Bactrim.  His immunos were Neoral and Cellcept. (And after a couple of hospital visits overhearing nurses, I learned that the Neoral was "the old kind", whatever that means  ) I remember his nephrologist being startled by this, and remarking that the surgeon in their practice "usually" had people off prednisone within a year.  We got very excited at the prospect and asked if he could get his drug regimen reviewed - but by then his labs weren't doing great and we got an indulgent chuckle at that suggestion.

After our hospital excitement last summer, after they declared the transplant kaput, they tapered him off all the mentioned drugs.  I don't recall the taper schedule for pred, I think the immunos were half right away and stopped completely after about a month.

He went through horrible, horrible bone pain for about a week, and that was a 2-4 weeks after stopping the pred, if I recall correctly.  It's hard to say whether that was withdrawal, as he had many festive things happening at the time.

[kellyt]

Apparently the Bactrim and the Valcyte I'll just stop.  He said don't refill them.   The Prednisone is coming down 1 mg/month currently.   It sounds like when I reach 5 mg I'll stay there for a few months and he'll watch my labs closely.  The I'll probably go down .5 mg or so a month.    Not 100% sure after 5 mg.

When I came off the Prednisone years ago after being diagnosed I had no problems at all.  No bone pain or anything.  I'm hoping for the same result this time.

[Falkenbach]

(And after a couple of hospital visits overhearing nurses, I learned that the Neoral was "the old kind", whatever that means  )

I only had my transplant in 2007, and I was also put on Neoral and Cellcept, so I don't know what "the old kind" means either. Due to a lot of side effects, I was taken off Neoral and placed on Rapamune in its place.

[rookiegirl]

Ah yes, Bactrim and Valcyte. I was glad to get rid of those as well. They kept putting me back on Valcyte, as I kept showing possible CMV in my bloods for a while there apparently. I went into hospital for a week with a nasty gastro bug a few months after transplant, but until they confirmed it was gastro (that took absolute days of testing and re-testing), they treated me for CMV. Anyway, all was well in the long run.

What is CMV?  I'm also currently on Bactrim (1/day) and Valcyte (Mon/Wed/Fri).  Is the CMV the cause of these medications?

[Wenchie58]

I stopped Valcyte for about three weeks...then in this latest round of test they found CMV in my blood so Valcyte is back in my regimen.  I figure, when you're taking a handful what's one mroe.  I was down to 7.5 of prednisone a day, but for the past three days I have had IV's of 500 mg per day...so now we start the taper again.

[Falkenbach]

CMV is cytomegalovirus, something that once you are exposed to, you carry it for life. A large number of the population carries it without knowing it, it doesn't really affect the average person. But it can be very serious indeed to a transplant patient.

Valcyte is the medicine used to prevent any possible CMV infection post-transplant. I think Bactrim is to prevent a number of infections but, I was told, particularly lung infections.

[pelagia]

Here is a link to a relatively recent IHD thread on CMV:

http://ihatedialysis.com/forum/index.php?topic=8934.0

[rookiegirl]

I have tapered down to 1 tablet/day of Prednisone since May 16th.  I don't go back to the transplant clinic until June 29th.  Will I have to stay on 1 tablet/day for the rest of my life or will they stop the Prednisone?  I know some post transplant patient don't even take steroids as part of their anti rejection med.  I'm hoping to be off the Prednisone since I hear so many bad things about it if used for a long period of time.

[rookiegirl]

I have tapered down to 1 tablet/day of Prednisone since May 16th.  I don't go back to the transplant clinic until June 29th.  Will I have to stay on 1 tablet/day for the rest of my life or will they stop the Prednisone?  I know some post transplant patient don't even take steroids as part of their anti rejection med.  I'm hoping to be off the Prednisone since I hear so many bad things about it if used for a long period of time.

OK.  According to my clinic visit this past Monday,  I was told by my Dr. that I will remain on 5mg 1 tablet per day for the rest of my life.  This is because of the antibodies/high PRA.  So that answered my question.

[Rerun]

Again, I was on 10mg for 17 years and they tried to take me off too fast and I was so sick.  I would jerk when falling asleep, bad dreams, stiffness, no appetite.  I was experiencing adrenal failure. 

Your adrenal gland produces 8.5mg of cortisone normally, and when you are on prednisone for so many years your adrenal gland goes to sleep and has to wake up and start working again.

For long term prednisone the general rule is 1mg per month.

I'm still on 2mg a day just because I like the stuff.  I'm as limber as a 10 year old well, ok a 30 year old. 

                                                 

[kellyt]

Ha!  Good for you, Rerun! I used to be extremely limber.  I need to start stretching again.

I dropped to 6 mg today!  One more mg gone!  Slow and steady wins this race!   

[Falkenbach]

I've been on 1 mg for several months now, and I asked if I could come off prednisolone all together. My neph said that I could, but as my Sirolimus level is slightly low, I have to increase Sirolimus to 4 mg for a week first, then I can come off the prednisolone all together.

Oh yay!

[kellyt]

It's always something, right?

[Falkenbach]

Yep, but I'm happy with that arrangement 

I am off the prednisolone now, as of a week ago. I believe my moon face has already come down a bit.

[Wattle]

My transplant was July 13th and I started on 25mg. I have come down 5 and now 2.5 each week. I am now at 15mg daily. I asked about coming off completely and was told NO. I will stay at 5mg for the life of the transplant. They said it was due to rejection issues after being tapered off. My transplant was a 5/6 cadaveric donor.     I am happy to do as I am told as long as my kidney is happy.   

[monrein]

That's the same protocol I'm on Wattle, been taking 5mg daily for many many years and I don't seem to have any major trouble.