Re: Prednisone taper and transplant protocol

[Guest guest]

After my transplant I was on prednisone for 18 months, starting with

huge blasts during the transplant and cutting back over time so for

the last 10 months I was at 7.5 mg. Then I started a 5 month taper,

dropping to 5 mg the first month, 4 the second, 3 the next month,

until I was at 1 mg the 5th month. Each time I dropped down I could

notice the difficulty in performing any physical task. My muscles

would get fatigued much more quickly when that little bit of

prednisone was missing.

Many centers now taper prednisone much more quickly, getting patients

off prednisone by the end of six months. This may help reduce the

withdrawal symptoms, but I think they would still be noticeable. The

biggest thing it does is to reduce the bone loss, cataracts and other

long term effects of prednisone.

Tim R ltx 4/4/98

[Guest guest]

At the transplant center that Todd was transplanted ( Starzl

Transplant Institute, Pittsburgh) their protocol was NO prednisone.

Todd was never on any prednisone -not after the first or second

transplant. He is only on Prograf of which they said they will try

to wean him off of that at one year. I guess it is different at

different centers. But this is quite a bit different. I must say I

am thrilled he was not put on those high doses of prednisone and he

has done terrific without it. Any feedback on why this is not

followed by all centers.

Joanne (mom of Todd, 18, psc 12/01, crohns 1/02, tx twice 12/03 and

doing GREAT!)

> After my transplant I was on prednisone for 18 months, starting

with

> huge blasts during the transplant >

> Tim R ltx 4/4/98

[Guest guest]

Most centers continue to use prednisone because it was one of the

drugs that enabled transplants back before cyclosporin and tacrolimus

and other recent drug innovations. Since prednisone and immuran were

the standard at that time, new therapies were tested by adding another

drug to the standard mix and seeing if it worked better with fewer

side effects. The combinations with prednisone in the mix gave better

results so few centers wanted to risk rejection episodes if a cheap

and well tolerated drug (prednisone) could help prevent them.

But Starzl wasn't happy with the status quo. He was one to push the

envelope from the very beginning. (There are probably other that

deserve credit too, but I don't know the story's details.) He started

worrying about the long term effects of the drugs and wondering if

they were really necessary. The result is the protocol used with Todd

- no prednisone unless rejection is observed. It probably requires

closer monitoring for a while in order to catch rejection early. But

the advantage is no steroid withdrawal, no bone loss, cataracts or

other prednisone side effects. Now they just have to show that long

term it is just as good or better than the old protocol with prednisone.

Tim R

> At the transplant center that Todd was transplanted ( Starzl

> Transplant Institute, Pittsburgh) their protocol was NO prednisone.

> ... Any feedback on why this is not followed by all centers.

[Guest guest]

Friends:

I've been following this discussion with more than passing interest.

The standard protocol at my tx center in Omaha is to continue

prednisone indefinitely post-tx (so obviously I'm envious of those

being weaned off--or, better yet, have really never been put on it).

The hep doc at my annual checkup in May gave the stock reply: My

continued good health is proof that the drugs (in my case 2 mg

Prograf, 25 mg Purinethol, and 5 mg prednisone each day) are

working. Of course, I believe that overlooks the growing threat of

kidney and bone-marrow damage. I'm meeting with my local

nephrologist next week for a major consult/exam, and have just done

recent bone-density and creatinine-clearance tests.

My creatinine remains steady at 1.8 (somewhat high but not

critical), which using the standard formula gives me a creatinine

clearance of 47 (above 90-100 is considered normal for men, but then

who among us can say we're " normal " anymore?). However, a 24-hour

urine sample showed a creatinine clearance of 32, but that test is

subject to considerable variables--especially considering that I had

consumed beef and worked out with weights during the collection

period (NOW I know that's a no-no). I haven't heard the results of a

second test yet, but I'm hoping/assuming the number will be at least

a bit higher. Here's why I'm concerned though: a minimum criteria

extablished by UNOS for kidney tx wait-list is a creatinine

clearance of <30. Now, I continue to feel great (in fact, better

than at just about any point in my entire life) but when numbers

start showing up like these, it begins to raise some red flags.

I'm eager to find out my bone-density results. I haven't had that

test done since 1998. Apparently my height has " shrunk " by a half

inch in the interim--not a particularly good sign. Both prednisone

and Purinethol (6-MP) are hard on bone marrow, and Prograf is tough

on the kidneys. The shock of my first liver tx caused my kidneys to

shut down completely and as a result I was on dialysis for almost a

month. That's an experience I never want to go through again!

Fortunately, I have a great advocate in my nephrologist (note to

Maureen: she absolutely INSISTS on getting magnesium levels checked,

even though the liver tx team is hit or miss on that issue).

In addition to the meds, I supplement with calcium (my nephrologist

switched me from citrate to carbonate), calcitriol (vit D),

potassium, magnesium, and Actonel (supposedly gentler than Fosamax),

and regularly lift weights and use a stationary bike. We'll soon see

if that protocol is working. In any event, I'll no doubt continue to

press the tx center team to reduce meds.

Before my liver txs, my GI doc cautioned me that getting a tx

would " just " switch me from one chronic condition to another. That's

true, but there's absolutely no comparison between the before and

after situations. I hope all those in this group in the " before "

category keep that in mind.

Rich in KC

Crohn's, cryptogenic cirrhosis, 2 liver txs 5/2003

[Guest guest]

> Rich, Thanks for the encouraging and informative thoughts. Can you

explain more about the calcium carbonate being better than citrate?

I have osteopenia, and osteoporosis in my injured arm. I take the

calcium citrate, but will change if that's what would be better.

Take care, Cheryl in ID

Cheryl:

There is probably no one hard and fast rule regarding calcium

supplementation. Both citrate and carbonate have advantages and

disadvantages (and it may be that calcium citrate/malate may be even

better in some cases, too). Citrate is generally absorbed more fully

and is best taken without food, but if there's a concern for kidney

stones then it may be better to take calcium carbonate, which should

be taken with food.

I'm probably going out on a limb with this nesxt statement, but it

may be that if your liver is your primary concern, then sticking

with calcium citrate is the best route. In my case currently, my

transplanted liver is doing just fine and its my kidneys that are of

concern. So that's why my nephrologist had me switch. There have

been some studies that show that calcium citrate may cause increased

absorption of aluminum as well.

We've had discussions in the PSC group in the past about different

forms of calcium and this may spur more comments. One thing is

clear: we all need to be concerned about the health of our bones,

which can suffer because of diseases and the meds used to treat

those diseases.

Hope I haven't muddied things too much with this.

Rich in KC

Crohn's, cryptogenic cirrhosis, 2 lv txs 5/2003