Transplant problems

[Guest guest]

Dear Ruth;

You might take a look at this page on Prograf (tacrolimus):

http://www.nlm.nih.gov/medlineplus/druginfo/uspdi/202914.html

The " usual " dose range cited here for oral prograf is 0.045 to 0.14

mg per pound of body weight a day; so for someone of 100 lb in

weight, that would 4.5 mg to 14 mg per day.

I am so sorry to hear that is not feeling too good ... have

you talked to her transplant team about this? Have her doctors been

checking her kidney function?

Best regards,

Dave

(father of (19); PSC 07/03; UC 08/03)

[Guest guest]

Hi Ruth,

Todd had problems with Prograf in the beginning. You can't compare

the Prograf doses just after transplant with what others are taking

months after transplant. Prograf is a balancing act in the

beginning. The important thing is what the FK levels are showing in

the labs. Some need more in the beginning to keep their levels

up...Todd at one point was on 10 mg twice a day (he weighed less

than 100 lbs), but other times only 5mg twice a day. It varied for

awhile.

I could always tell when his FK level was too high...his hands

would shake and he would always feel lousy. At one point when he

was still in the hospital and his FK was 17 (that is high for Todd,

but still in the normal range)he had a grandmal (sp?) seizure. It

was such a balancing act and it took a few months before his body

adjusted to normal doses. Now (17 months post transplant) he takes

2mg in the am and 1mg pm. But when he gets his labs I always check

the FK level and if it is high...I always remind the coordinator

about his seizure and how 17 is too high for him. Prograf has its

side effects as do all anti-rejection meds. It just takes time for

the body to adjust to the changes. Do you know what 's FK

level is and how often are they doing labs? When the surgeon said

it may be too much Prograf...did he lower her dose? Keep on the

surgeons until she is comfortable.

Hang in there...better days are ahead.

Joanne (mom of Todd, 19, psc 12/01, crohns 1/02, LDLT 12/03, 2nd tx

12/03 and living life to the fullest in 05)

Has anyone had any problems with Prograf?

Ruth B.

[Guest guest]

Ruth,

My Son Rendall was transplanted (first time) in 1996. He suffered a blocked

hepatic artery about a week post transplant, and required another transplant

about three weeks later. With this second transplant, he had severe

rejection, and was on a high dose of prograf, OKT3, and other anti-rejection

drugs. During recovery from the second transplant and after the rejection

was stabilized, he had a series of Grand Mal siezures due to prograf levels

being too high. He has since had PSC recurr, and was re-transplanted in Jan.

of this year. His prograf dose has been higher this time, (5-6mg twice a

day), but is now down to 3mg twice a day. We can tell when the prograf is

high because his hands become very shaky. Hope this helps with your

question.

Best of luck.

Bill E. in Idaho

----- Original Message ----- > Has anyone had any problems with Prograf?

> Ruth B.

>

>

>

[Guest guest]

Thanks for the info. Do you remember what level Prograf he was on when he had the seizures? Ruth

[Guest guest]

I don't remember what dosage he was on at the time of his seizure.

It

was a few days after his 2nd transplant. He was still in the ICU and

all I remember was that his dosages were being adjusted regularly.

The important thing to remember is that the FK levels are in a good

range...not too high and not too low. Have the doctors done anything

to help with her symptoms?

Joanne (mom of Todd, 19, psc 12/01, crohns 1/02, tx twice 12/03 and

living life to the fullest in 05)

Do you remember what level Prograf he was on when he had the

seizures? Ruth

[Guest guest]

It's not the amount of prograf the patient is taking that's important,

it's the amount that shows up in the bloodstream.

Everyone's body works differently, some process drugs quickly, some

absorb less. And an individual's body acts differently at different

times. (During a time of vomitting and diahrrea, you might need higher

dosages.)

If the surgeon is questioning whether it's too high, he/she should

order a blood test and you'll know.

Quantell also failed to maintain good levels on cyclosporine. After the

switch to prograf (then called FK506), it took several months of

frequent labs and dosage tinkering to get a steady level. His 78-lb.

body requires 16 mL to maintain a target level of 7-10. Your mileage

will vary.

Pam (mom to Quantell, 15, dx 1996, tx 2001)

[Guest guest]

Dear Ruth,

My heart goes out to you. What you are going through are still vivid

memories in my mind...watching your child in pain and feeling

miserable...the fear of the unknown...and most of all (for me at

least) the longing for life to return to normal. Just try to keep

the

faith and we will all be praying for that all will go well

with

the biopsy tomorrow.

Todd felt miserable for awhile...at least a few months. He had many

recurring bouts with CMV. The 2nd liver(not his brother's) that he

received was CMV positive and Todd had a tough time with the CMV.

But

that shows up in the labs. He did also have a tough time adjusting

to

the Prograf, but it just took some time and like I said a lot of

fiddling with the doses to get it right. There are just so many

different things that can happen after transplant...it sounds as

though 's doctors are on top of things...hopefully you will

have

some answers soon. Is in the hospital? Or is she going in

tomorrow for the biopsy...if so, I am very impressed that they are

doing it on a Saturday of a holiday weekend. Let us know what the

results are. We are anxiously awaiting to hear.

Sending you hugs from one mom to another who has been in your shoes,

Joanne (mom of Todd, 19, psc 12/01, crohns 1/02, tx twice 12/03 and

living life to the fullest in 05)

She is miserable - is this how Todd felt? Ruth B.

[Guest guest]

Ruth

Is 11.5 your daughter's Prograf level? That is higher than they let my son's be. elevated levels will give you a headache. How long ago was she transplanted? Is this acute or chronic rejection? I am told they react differently and are treated differentedly. We are only 2 months out from tx so thank good except for an infection things have gone well. I will pray for both of you. It is hard to be the mom.

MartiGitaneB@... wrote:

Dear Joanne, Thanks for responding. 's level is 11.5 and she is on 10 mg. twice a day. But, she is having terrible headaches, a sharp pain in her side, nausea and pressure and pain in the groin area especially when she urinates. Her LFT's had been perfect but, she is having a liver biopsy done tomorrow because they have started to go up and they say there is rejection going on. She doesn't have a urinary tract infection and the kidneys so far are OK.. She is miserable - is this how Todd felt? Ruth B.__________________________________________________

[Guest guest]

Maybe someone can help with this problem. It has been almost six weeks

since 's transplant. Her ALK is slowly creeping up - not what it

was like pre-transplant but still worrisome to the docs. She is having

an ERCP done on Monday. The liver biopsy showed no rejection. The

ultrasound showed nothing. She also has a flat lump under the vertical

part of her incision (under the skin) that is painful and seems to be

expanding. The surgeon said that they had never seen that before but

put her on an antibiotic which so far has not helped. It actually

seems to be worse. She says some of her lymph nodes under her arms

seem to be enlarged. Any ideas? Thanks. Ruth