Meds after Transplant

[MIbarra]

I just stopeed taking the touches after about 3 months. They were annoying to try and remember and I hated the gritty little things. Never got thrush. I had to use nystatin cream for different parts of my body due to ring worm -- I think it was my class' pet hamster that was to blame for that.

[Falkenbach]

I think my Bactrim was stopped at around the 6 month mark. My prednisolone is still 7 mg (only just reduced from 8 mg last week) which I've been disappointed with - most people that went through at the same time as me were down to 7 at about the 6 month mark, I think. But we've had trouble getting my meds stable.

I am currently on mycophenolate and sirolimus for anti rejection. I started on cyclosporin before sirolimus, but it didn't agree with me.

[stauffenberg]

It is not a good idea for patients to wean themselves off of prednisone, since total withdrawal of prednisone post-transplant carries a 25% risk of acute rejection, and even if this is controlled, each episode of rejection permanently diminishes the life-span of the renal graft.  Generally, patients feel better when taking prednisone, since it can boost energy and create a chemical 'high.'

[Falkenbach]

If I remember rightly, I've been told by my doctors that I will most likely be off prednisolone after 2 years or so. It will probably be longer for me, though, as my progress has been a little erratic.

[donnia]

i just had my transplant a week ago and i am on 5 Rapamune, 30 mg Predisone, and 2160 mg Myfortic.

[MyRenalRomance]

I am 5 weeks post transplant.  I was never on Bactrim due to having an allergy to it.  I am currently taking 7.5 mg of Prednisone, and am on a tapering schedule (started off at 20 mg).  I am due to be off the Prednisone by Dec. 17, 2008.

[Nan]

It is so nice to hear "other" people refer to prednisone as an EVIL drug!  In the hospital for the first three days..........they gave me 500 mgs . of prednisone by IV!  I was shocked at the amount.......but they promised me it would be only three doses........you can not believe what that amount did to me, I truly was suicidal!  I went completely looney for about a week.  I am almost six months post transplant and I am on 5 mgs of prednisone , 75mgs of Gengraf twice a day, 1,000mgs of Cellcept twice a day, 120mg Diltiazem CD once a day, and fourteen other types of pills a day....protonix, toprol, zocor. synthroid, neurotin. fosamax. glucotrol, k-phos, lasix, kor-con and vit d. Then there are my insulin shots......I truly never wanted to be druggie when I grew UP!  I still have bad bouts with shaking.....and SOMETHING is affecting my sleeping and anxiety.  My moon face is slowing going down....so everyone says......my feet and ankles are less swollen..........I am anxious to see what changes they make at my six month check up..........last I was told my gengraf was a bit low.......and they are always giving me shots for my anemia..........keeping my meds in order......is like a part time job!

[Chris]

I am on 5 mgs , 75mgs of Gengraf twice a day, 1,000mgs of Cellcept twice a day, 120mg Diltiazem CD once a day, and fourteen other types of pills a day....protonix, toprol, zocor. synthroid, neurotin. fosamax. glucotrol, k-phos, lasix, kor-con and vit d. Then there are my insulin shots......

Was that a typo you said 5mgs, 75 mgs of Gengraf twice a day. Are the pills only in 5 mgs and you have to take 75 mgs of them twice a day?
The protonix that made me feel really weird after being on that for a lng time. I started to have a fear of taking a shower which was really odd. I felt really different till I stoppped that med and2 days later I started to feel more normal. I'm sure some of those meds you will stop taking like the lasix, possibly vit D depending on blood work.
Good Luck on 6 month check up, hopefullly less meds for you.

[KT0930]

Chris, I think she meant she's on 5 mg of Prednisone and 75 of Gengraf, which is one of several immunosuppressants being used currently.

Nan, I remember when I had my first transplant at age 8, and they would adjust my amounts of prednisone. The first time they did it, no one warned my mother about the emotional side effects of changing the dose. I would get upset at my parents about something really insubstantial, threaten to run away, pack my suitcase, then go sit on the curb across the street and cry for an hour. It was awful! I once heard that prednisone is so old that it was never approved by the FDA. Though in reality I know this probably isn't true, after dealing with some of the problems from it, I really have to wonder.

[Chris]

Chris, I think she meant she's on 5 mg of Prednisone and 75 of Gengraf, which is one of several immunosuppressants being used currently.

I feel stupid now after reading the older post. Makes sense now. Should have refreshed myself on the topic more.

[mariannas]

Well....let's see,  I had my transplant in 1984 and I'm still on bactrim.  My current neph tried to lower my dose about a year ago and I kept getting annoying colds so I went back on the everyday regime.  Honestly, I kind of like it.  Even though I have a barely working immune system, I never get sick.  I've had CMV, pneumonia, and shingles, but it's all been rather random and far apart. 

[kidneyx3]

I had my one year appointment with my transplant neph this week. I thought he would take me off of the Bactrim I've been on since the transplant. My transplant team (from a different hospital) thought it was strange that I was on the Bactrim passed 6 months. My neph said he likes to keep transplant patients on it just in case... So those of you who have had transplant, how long were you on the Bactrim if you were on it?

What about prednisone? I'm down to 7.5 mg a day. Has anyone ever been able to stop taking the prednisone or am I on this for the life of the transplant?

Thanks for your input!
They tell me it's best to be on bactrim for life to ward off urinary tract or kidney infections. I'm all for increasing the lifespan of my new kidney  but this prednisone for life is awful. I can't stop eating! 20lbs. came outa nowhere!

[pelagia]

So strange that I never saw this thread before...

We asked Stephen's nephrologist about tapering off the prednisone and his response was "taking a small dose of prednisone beats the alternative of losing the kidney."  What can you say to that?  He's down to 10 mg a day at 3 months. My understanding from the conversations we had with the docs when they were initially setting up his drug protocol is that the dosages for the immunosuppressives are based, at least in part, on age, gender, and race.   

I keep wishing we could get back to the clinic at the hospital at some point because they are the ones who are actually setting the protocol.  Unfortunately, they are over an hour from home.  Stephen won't be going back there unless he has some sort of a rejection episode or another problem.  I am so much better informed now than I was 3 months ago and I have a million questions I would like to ask!



 

[okarol]

We drive 2 hours to see the Scripps transplant team every 3 months. We see Jenna's local nephrologist every 2 months, but still have a great relationship with Scripps and they have set Jenna's steroid-free protocol. A non-transplant connected neph at Scripps tried starting Jenna on prednisone immediately following the transplant, and I said "But she's is not going to be on any steroids." She laughed, saying "She will do better with a little insurance." I called the transplant neph, and he was stunned, disagreeing completely. Somehow they worked it out behind closed doors and we were kept in clinic (organ transplant dept.) rather than being released to that in-house neph, who did not agree that steroid avoidance was the best way to go.

[Chris]

We drive 2 hours to see the Scripps transplant team every 3 months. We see Jenna's local nephrologist every 2 months, but still have a great relationship with Scripps and they have set Jenna's steroid-free protocol. A non-transplant connected neph at Scripps tried starting Jenna on prednisone immediately following the transplant, and I said "But she's is not going to be on any steroids." She laughed, saying "She will do better with a little insurance." I called the transplant neph, and he was stunned, disagreeing completely. Somehow they worked it out behind closed doors and we were kept in clinic (organ transplant dept.) rather than being released to that in-house neph, who did not agree that steroid avoidance was the best way to go.

I hate doctors like that. My transplant hospital had me see a nephrologist there who is not part of the transplant clinic, but she would always ask them questions to be sure it was ok to do something that may harm the transplant. At the time the transplant clinic did not have follow up doctors, just nurses and surgeons. That has changed now and I see a transplant neph, the neph I was assigned to and a local nephrologist.

[donnia]

I am now 11 weeks post tx and I am taking bactrim every MWF (as I have from the beginning).  I asked my tx team and they said they will take me off it at the 6 month mark.  They have lowered my Rapamune from 5 mg to 4mg a day, Im down from 30 mg Prednisone to 15mg.  Next week I will start alternating 15 mg to 10 mg Prednisone for 2  weeks.  Then I will be on 10 mg for one year and the goal is to take me completly off of it after a year.  My neph here has lowered my Myfortic from 2160mg to 1800 mg (to hopefully help my liver levels which ave been high).  My neph also took me completly off my Lipitor and now I take Fish Oil for my cholesterol and triglycerides.  Oh yeah, I m on 900 mg Valcyte for another 2 or 3 weeks. 

[pelagia]

Stephen has been talking to the folks at the tx clinic this past week because his neph has suggested lowering his tacrolimus.  His trough number was 8.1 two weeks ago and 6.1 last week, so it seems to be jumping around a little.  There's been some discussion on IHD about getting the trough level down into the 3-5 range.  In terms of the trough value, anyone remember where they were at 3 months?  How about 6 months? He is also on 10 mg prednisone.

[okarol]

They like to keep the level high enough to be effective but low enough to avoid toxicity - not sure what Jenna's level is - I have to check - maybe this will help? http://ndt.oxfordjournals.org/cgi/content/full/16/9/1905

[pelagia]

Well, I completely screwed up in my last message, but thanks for the point to the article Karol, which was still a useful read. 

The neph had Stephen lower the Cellcept.  Stephen was taking 1000 mg of Cellcept 2x a day.  He just started this morning with 750mg 2x a day.  I did an IHD search and it appears to me that most IHD folks are taking 500 - 750 mg 2x a day.

I would still like to hear from folks about the doses for both Cellcept and Prograf at the 3 mo. and 6 mo. marks.
 

[kitkatz]

To that other doctor and his damned steroids   

[okarol]

Well, I completely screwed up in my last message, but thanks for the point to the article Karol, which was still a useful read. 

The neph had Stephen lower the Cellcept.  Stephen was taking 1000 mg of Cellcept 2x a day.  He just started this morning with 750mg 2x a day.  I did an IHD search and it appears to me that most IHD folks are taking 500 - 750 mg 2x a day.

I would still like to hear from folks about the doses for both Cellcept and Prograf at the 3 mo. and 6 mo. marks.
 

Here's what Jenna was taking the first days following her transplant http://ihatedialysis.com/forum/index.php?topic=1721.msg34479#msg34479
The Prograf level was changed a lot the first 6 month and the CellCept was reduced early on - I will have to look further to find the dosages.
Nineteen months post-transplant she is on 500mg Cellcept, (2 in the am and 2 in the pm), 7 mg Prograf (3 in the am and 4 in the pm)

[pelagia]

Turns out Stephen's white blood cell count was low.  That's why they dropped the cellcept dose. 

He was supposed to fly to the midwest this week, which would be the first time flying since the transplant.  At the last minute the trip was canceled.  Thank goodness, because the clinic told him that flying with his low wbc would make him very susceptible to catching something.

On the 15th we leave for Kansas for a festival and hopefully his wbc will be where it should be because there will be 15,000 people at the festival!

[monrein]

Whenever I fly I always take some Simply Saline spray to keep my nostrils hydrated and also to regularly flush my nasal passages of any germs that might be considering setting up residence there.  There's also a gel that can be used as a bit of a barrier.  I also drink a lot (when I had a trx as Stephen does) of water to stay hydrated and right after transplant I would consider wearing a mask.  All this because of recirculated air which is essentially a form of germ soup. 

[pelagia]

We will be flying to the west coast for Thanksgiving, so I'm sure that will be a madhouse.  I will try to remember about the saline.