Prograf problems

[Guest guest]

It has been a little over three weeks since 's transplant and he

is still having trouble with the Prograf. As I said it the message to

athan last night, they are having trouble getting the level at a

good level without the brain being effected. He has trouble

communicating esp. finishing sentences and the shaking is very bad.

His mouth even shakes! The level was low today so they increased the

dosage. They mentioned trying a different drug if he continues to

have trouble.

Has anyone else had issues with the anti rejection drugs?

I feel like my needs for this support group have shifted from

pretransplant problems to this whole new world of post transplant

questions. I have to say, I'm glad to have this new focus!

[Guest guest]

,

My sympathies over the problems getting 's meds adjusted to

levels that are non-toxic AND protective to the transplant.

My initial prograf levels caused tremor and headaches during the first

month or so when the desired blood levels were 12 to 15. After the

dosage was reduced to maintain blood levels in the 7 to 10 range my

side effects went away. Now, after further reduction due in part to

concerns over kidney damage, I have a blood level of 3 to 5 with no

signs of rejection.

The side effects of the initial high dosage may be severe enough that

an alternate immunosuppressant may be needed.

Tim R ltx 4/4/1998

>

> It has been a little over three weeks since 's transplant and

> ... they are having trouble getting the [prograf]level at a

> good level without the brain being effected. He has trouble

> communicating esp. finishing sentences and the shaking is very bad.

> His mouth even shakes! The level was low today so they increased

the

> dosage. They mentioned trying a different drug if he continues to

> have trouble.

>

> Has anyone else had issues with the anti rejection drugs?

[Guest guest]

His levels last week were around 7 and he was having terrible side

effects. Yesterday's blood work showed his Prograf level at 0. That

is the reason for the increase, I'm keeping my fingers crossed that he

doesn't get back to the way he was last week when he was on this

dose. The most he has taken is 3 mg twice a day, and at that he was

eating his meds, and screaming at people to leave him alone. That was

awful, but then they lowered him to 1 mg in the hospital and he showed

improvement, but the levels were too low at the next blood work once

we were discharged,so, up to 2 mg we went, more side effects, back to

1, too low! Back to 2 today and labs again on Thursday. We will see.

Now he is battling a cough. They did a chest x ray yesterday. I

haven't gotten the results yet. One day at a time..

[Guest guest]

Dear ,

Tell to keep hanging in and the prograf will level out. Sometimes it is hard to babance. When did he have his TX? I had mine on the 17th.October and so far I am ok despite the slightly suboptimal prograf level. What kind of side effects is he having? I mostly get a tremor in my hands which is improving. Good luck with the cough.

Ali

[Guest guest]

Dear ,

2nd. thought - Maybe we should start a subgroup here for post TX issues. I am feeling this need too. Kind of like the Moms PSC group. They will either settle the Prograf issue or start another kind of drug. I forgot to ask, Is he taking any prednisone with his Prograf?

Ali

[Guest guest]

,

Getting prograf dosage adjusted can be quite a challenge, especially

when absorption from the intestines and metabolism by the liver is not

stable. 's swings in prograf blood levels seem to be extreme. I

hope that soon he will establish a stable level that works.

I hope he quickly shakes off the cough and that nothing more serious

develops from it.

Tim R

>

> His levels last week were around 7 and he was having terrible side

> effects. Yesterday's blood work showed his Prograf level at 0.

[Guest guest]

Ali,

I like that idea a lot. The transplant support group generally on

Yahoo for livers just isn't the comfort zone for me that this PSC

group is, so I'd love to be able to confine our discussions to other

PSCers who have undergone transplant.

In fact, I have a question for those who have either been

rediagnosed with PSC or who have found that they need a second

transplant for other reasons - At what point did you find out that

your " new " liver was going to need replacing? I'm at a year and a

half, and I've pretty much accepted that this isn't a 10-40 year

liver for me. I'm hoping for five.

My recent MRI shows changes in my intrahepatic bile ducts, continued

presence of the clot in my right portal vein (worsening) and

fibrosis and " regenerative phenomena. " Regarding the worsening bile

ducts, the MRI says that " Differential considerations would include

recurrence of primary sclerosing cholangitis, or inflammatory

changes from infectious cholangitis. Ischemic injury [the clot could

cause this, right?] may produce an identical appearance. Clinical

correlation is advised. " One of my questions for the doc when I see

him on 12/27 is what would they be looking for clinically? (We had

scheduling issues or it would have been sooner.) Symptomatically, I

feel like I'm in early PSC with frequent cholangitis, itching, and

fatigue.

How have others dealt with accepting that their new liver isn't

a " keeper " ?

Any perspective would be helpful. Reading the report was a lot to

swallow. I'm vacillating between denial and relief that I wasn't

imagining that something was wrong - very much like diagnosis the

first time.

Thanks,

Deb in VA

[Guest guest]

Ali, had his transplant on November 18. I agree with your

idea

about a post transplant group. To answer your question about his

side

effect; he really has trouble communicating his thoughts. He will

get

started with a sentence and then forget what he wanted to say or

just

stop. He has trembling all over. His mouth even trembles. To

answer

the question about the Prednisone, he is currently down to 17.5 mg

once a day. Since his Prograf level is back down to almost non

existent the

communication is much better, but once again, the level is too low

and

neended to be increased. Time will tell I guess. The chest x ray

showed that he had Bronchitis and maybe a touch of Pnuemonia. They

started him on Leviquin today. All in all, he is doing pretty good

though. I'm so happy to have him talking with me sensibly today.

>

> Dear ,

> 2nd. thought - Maybe we should start a subgroup here for post TX

issues. I

> am feeling this need too. Kind of like the Moms PSC group. They

will either

> settle the Prograf issue or start another kind of drug. I forgot

to

ask, Is

> he taking any prednisone with his Prograf?

> Ali

>

[Guest guest]

Dear ,

As you can see by the time I don't sleep well BUT the upside is that I answer my emails!

As for and his Prograf - I had some of the symptoms that you mentioned - I felt like I was trembling all over as well, my hands were a mess. It was hard to write or type - one of the reasons I didn't get online early on. My Mouth trembled as well, come to think of it. And I definitely wasn't thinking straight. I definitely depended on Jeff to talk with the docs early on because I felt so muddled all the time. Looking back now I was also a little confused at times. And irritable. What he has just been through is huge and it takes a while to regain some control over what he has been through. I don't think anyone is fully prepared for how they will feel after the surgery. I suspect we don't talk a lot about it on the psc site for fear of upsetting those who have not gone to TX yet. That is a huge reason we probably need to start another group.

I asked about the Prednisone because it can cause a lot of irritability. It can really mess with your mind. Never mind all the other side effects - but it is a great medicine for getting this situation under control. 17.5 mg is not a huge dose but is enough to aggravate him.

I also ran fevers after surgery off and on. I had a pleural effusion which left me a little short of breath, probably complicated by my asthma. So I was also on Cipro for 3 weeks, along with all the other anitbiotics .

Almost all of the problems you are talking about are early days stuff. It will all eventually clear up I feel sure.

Be sure to get your rest - you have a hard job. I feel sure I wore my husband Jeff out in the early days.

Ali

[Guest guest]

Dear Deb,

I agree about the comfort zone of this group which is why I have not already gone out side this group so far. However, I really feel the need to discuss with other TX folks this experience and what my daily life is like. Although the PSC group is wonderful I really want to have a group of just TX folk. There are issues that are specific to TX that could be discussed without fear of disturbing those who have not gone to TX yet. PSC is one thing and the TX is another. Different concerns. Also the issue of recurrence and retransplant are important issues that could be discussed.

The ischemic changes mentioned in your report could be the answer for what is driving the problems in your liver. Yes, that refers to the embolus in your portal vein. It could conceivably not be recurrent PSC. As far as clinical correlation is concerned I am guessing that type of eosinophils, and other white blood cells, and visual patterns could confirm the difference in degenerative changes and PSC changes. In any case the fatigue, itching, and jaundice could be just general symptoms of the liver not working well - They don't have to mean recurrence.

I think you are right to look at this thing and figure out what is going on. Being realistic is hard but so necessary to deal. I of course think about these issues as well. It's all part of the tx thing.

I have always maintained that you are one brave woman and that you will see this thing through and that it will get fixed. Denial and relief are two necessary emotions. They help you get where you need to be.

So who knows how to start a group of TX folks , as an offshoot of this group?

I am definitely interested.

Love,

Ali

[Guest guest]

Deb,

My diagnosis of recurring PSC was about 6 years after my first

transplant. It is hard to take. The thought of another transplant

didn't bother me as much as having to go through all the PSC crap

again. I had a PCT tube placed and it had to be replaced every 6

weeks. That was a real pain. I was on the list for 17 months before I

got my first transplant. That was before MELD score was used. I

wasn't ready for that to happen again. When they listed me the second

time my MELD was 25, mostly due to a high bilirubin level, so my wait

for the second liver was only 1 month. It's been over two years since

my second transplant and everything is fine. All my liver levels are

normal, after my first transplant my bilirubin was never in the normal

range. I'm expecting many years out of this liver and hope that PSC

stays away this time.

PSC 89, TX1 97, TX2 04

> In fact, I have a question for those who have either been

> rediagnosed with PSC or who have found that they need a second

> transplant for other reasons - At what point did you find out that

> your " new " liver was going to need replacing? I'm at a year and a

> half, and I've pretty much accepted that this isn't a 10-40 year

> liver for me. I'm hoping for five.

> How have others dealt with accepting that their new liver isn't

> a " keeper " ?

> Deb in VA

>

[Guest guest]

Ali,

Thank you for reassuring me that it will get better. It always helps

to hear from some one who has gone through it and knows what I'm

talking about. He is much better today and agreeing to go to Physical

Therapy. He refused to talk about it all last week. We have blood work

and a doctor's appointment tomorrow. We are keeping our fingers

crossed that the Prograf level is good. He also gets the staples out

tomorrow. Everyday he gets a little stronger. We were just not

prepared for how weak he would get. He was basically pretty strong

prior to surgery, but I guess all that time not doing anything would

weaken anyone. Once again, I agree about a support group for those of

us that have had the tx. I feel like if I had read some of the

complications prior to 's surgery, I may have been more frightened

than necessary. I hope we are able to get that started. I still would

like to talk to the people here that know that PSC is unique from other

liver problems.

[Guest guest]

, I'm sorry to hear that is having problems with his anti-rejection medication. It's no fun when that happens. My doctors had me on Prograf, Cellcept and Prednisone. About 6 months after the transplant I started having problems (stomach pains and contant diarrhea). The doctors finally figured out that I could not tolerate the Cellcept so they had to take me off of it. Well about the same time as this happened my Prograf reached toxic levels and I experienced a lot of the same problems you described. The doctors dropped my dose in order to get me down to 0 and then started adjusting it up by 1/2mg. I noticed in your e-mails that 's adjustments are being made by 1mg increments. There is a 1/2 mg pill available and maybe what he needs is a smaller increase. Pat (CA) Peace wrote: His levels last week were around 7 and he was having terrible side effects. Yesterday's blood work showed his Prograf level at 0. That is the reason for the increase, I'm keeping my fingers crossed that he doesn't get back to the way he was last week when he was on this dose. The most he has taken is 3 mg twice a day, and at that he was eating his meds, and screaming at people to leave him alone. That was awful, but then they lowered him to 1 mg in the hospital and he showed improvement, but the levels were too low at the next blood work once we

were discharged,so, up to 2 mg we went, more side effects, back to 1, too low! Back to 2 today and labs again on Thursday. We will see.Now he is battling a cough. They did a chest x ray yesterday. I haven't gotten the results yet. One day at a time..

Access over 1 million songs - Yahoo! Music Unlimited.

[Guest guest]

Pat it sounds like you were on the same drugs is on. He is also

taking Cellcept (1000mg twice a day) Prograf (2mg twice a day) and

Prednisone (down to 15 mg once a day starting tomorrow). His doctor

said that levels that other people should be fine at seem to be causing

all kinds of problems for . Although, he is doing 100% better

than last week. He still shakes, more so when he thinks about it and

today at Subway the guy making his sandwich was yelling questions at

him like, what do you want? and couldn't form a response. He

got so frustrated because he knew what he wanted, but he couldn't tell

the guy. These are problems that the doctor feels will get better as

his body gets more adjusted to the meds. We found out today that if

everything is fine at his appointment next week and the Pnuemonia seems

to be better we can leave the motel and go home for Christmas. We will

have to come back the first of January to see the doctor and to have

the stent replaced during another ERCP. I'm just looking forward to

being home for Christmas!

[Guest guest]

I'll keep you in my thoughts and prayers. Hoping that makes it home for Christmas. Pat (CA) Peace wrote: Pat it sounds like you were on the same drugs is on. He is also taking Cellcept (1000mg twice a day) Prograf (2mg twice a day) and Prednisone (down to 15 mg once a day starting tomorrow). His doctor said that levels that other people should be fine at seem to be causing all kinds of problems for . Although, he is doing 100%

better than last week. He still shakes, more so when he thinks about it and today at Subway the guy making his sandwich was yelling questions at him like, what do you want? and couldn't form a response. He got so frustrated because he knew what he wanted, but he couldn't tell the guy. These are problems that the doctor feels will get better as his body gets more adjusted to the meds. We found out today that if everything is fine at his appointment next week and the Pnuemonia seems to be better we can leave the motel and go home for Christmas. We will have to come back the first of January to see the doctor and to have the stent replaced during another ERCP. I'm just looking forward to being home for Christmas! __________________________________________________