Meds after Transplant

[MIbarra]

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!

[okarol]

My daughter is 16 month post-transplant. She has always been on antibiotics (low dose) because she self-catheterizes and bacteria is always a risk. She was only on prednisone for the first 3days following the transplant and is on a steroid free protocol. They will only give her predisone if she should have a rejection episode.

[Romona]

I take Bactrim 3 times a week. I was told I will need to take it the rest of my life. I am on a steroid free regime.

[willieandwinnie]

MIbarra, my husband is almost 8 months post-transplant and they took him off bactrim at 6 months. He is on Valcyte M/W/F and the team said they will probably cut that back in June and then completely off it in September. Every transplant center has different criteria and nobody is the same. My husband took 5mg predisone for 1 day and they stopped it. He is only on Prograf. I'd ask the neph "in case of what"? But I'm nosy and ask too many questions. (So they say). 

[tamara]

Off Bactrim at six months and off valcyte now too. Yeah two less meds !

[stauffenberg]

Most prednisone-free programs require the patient to undergo a preliminary induction treatment with dangerous anti-CD molecule immunosuppressives at the time of the transplant, so it is difficult to switch to a prednisone-free regimen if you have not had the induction therapy.  However, you can be taken off prednisone entirely even without that initial treatment, though that switch will cause a 25% chance of acute rejection.  You will have to be monitored for rejection very closely for a month or so after stopping the prednisone, and even if they catch and stop a rejection early, you have to keep in mind that if the kidney experiences a rejection episode at any time, this will reduce the likely lifespan of the kidney.

[Chris]

I was off Bactrim after 6 months, but never was on prednisone.

[okarol]

Most prednisone-free programs require the patient to undergo a preliminary induction treatment with dangerous anti-CD molecule immunosuppressives at the time of the transplant, so it is difficult to switch to a prednisone-free regimen if you have not had the induction therapy.  However, you can be taken off prednisone entirely even without that initial treatment, though that switch will cause a 25% chance of acute rejection.  You will have to be monitored for rejection very closely for a month or so after stopping the prednisone, and even if they catch and stop a rejection early, you have to keep in mind that if the kidney experiences a rejection episode at any time, this will reduce the likely lifespan of the kidney.

What induction therapy?

Long term prednisone use damages the kidney too.

[MIbarra]

Thanks for all of your comments.

I'm also curious about the induction therapy. I presume this is done when you have a living donor and know ahead of time you are getting a kidney?

[Chris]

Most prednisone-free programs require the patient to undergo a preliminary induction treatment with dangerous anti-CD molecule immunosuppressives at the time of the transplant, so it is difficult to switch to a prednisone-free regimen if you have not had the induction therapy.  However, you can be taken off prednisone entirely even without that initial treatment, though that switch will cause a 25% chance of acute rejection.  You will have to be monitored for rejection very closely for a month or so after stopping the prednisone, and even if they catch and stop a rejection early, you have to keep in mind that if the kidney experiences a rejection episode at any time, this will reduce the likely lifespan of the kidney.

What induction therapy?

Long term prednisone use damages the kidney too.

Come to think about it, I really don't think I was on that program, but if there were names to those drugs then I would know for sure.

[KT0930]

Thanks for all of your comments.

I'm also curious about the induction therapy. I presume this is done when you have a living donor and know ahead of time you are getting a kidney?

Induction therapy (as I understand it) can be done within hours of the transplant. You would get one dose just before the surgery, and one dose a day (by IV) for the next two to three days. So yes, it can be done with a cadaveric donor.

As for bactrim, valcyte, and prednisone: I've never been on the bactrim more than 6 months, and my most recent transplant, I was only on that and the valcyte for three months. This was the only time I was on valcyte, because I was CMV positive. I've never been taken off prednisone, and because this most recent was my third transplant, they're keeping me on slightly higher doses of immune-suppressants than the average patient.

[stauffenberg]

Induction therapy involves giving drugs from the class of anti-CD molecules intravenously around the time of the transplant.  It is quite expensive; requires intensive medical supervision because sometiimes patients have a major reaction to the medication and their breathing can just shut down; but it very powerfully suppresses the immune system.  The many drugs based on anti-CD molecules are easily identified by the fact that they all end in the suffix -mab.  The major disadvantage of induction therapy, despite allowing prednisone-free regimens and helping patients accept incompatible organs for transplant. is that it causes a very high rate of lympathic cancer over the years following the transplant, which is extremely difficult to treat successfully.

Prenisone is not a nephrotoxin like most of the classic calcineuron inhibitors (i.e., cyclosporine and its family), but would only very indirectly harm the kidney by raising blood pressure and causing diabetes.

[okarol]

Jenna was found to be sensitive to her donor's B cells in the final crossmatch, so was given IVIG and a plasmapheresis treatment about 18 hours before the surgery. She was also given antithymocyte globulin (ATG) after the transplant.

This is from http://www.medscape.com/viewarticle/473989_print

Introduction

Since the early 1960s, corticosteroids have been the mainstay for acute rejection prophylaxis after organ transplantation. The use of corticosteroids is however, associated with several well-documented side-effects as hypertension, hyperlipidemia, new-onset diabetes mellitus, infections, accelerated bone loss, weight gain, and cosmetic changes.[1] The availability of new, potent, and more selective immunosuppressive drugs has challenged the necessity of adding corticosteroids for rejection prophylaxis. The introduction of the calcineurin inhibitor cyclosporine was a major advance in organ transplantation, positively influencing graft survival. Studies concerning withdrawal of steroids in patients on cyclosporine-based immunosuppressive therapy have shown an improvement in steroid-related side-effects,[2-5] but at the price of an increased incidence in acute rejection and long-term graft failure.[6] Depending on the selection of the patients and timing of steroid-withdrawal, up to 50% of the patients had to resume steroids.[7,8] Newer, more potent immunosuppressive drugs, such as the calcineurin inhibitor tacrolimus[9,10] and the antimetabolite mycophenolate mofetil (MMF), seem to overcome the problem of acute rejection after steroid-withdrawal. Using a tacrolimus-based immunosuppressive regimen, withdrawal of steroids at 3 to 6 months after transplantation was possible in the majority of the patients.[11-13] Acute rejection episodes occurred in ± 5% of the patients after withdrawal.

[spacezombie]

Induction therapy involves giving drugs from the class of anti-CD molecules intravenously around the time of the transplant.  It is quite expensive; requires intensive medical supervision because sometiimes patients have a major reaction to the medication and their breathing can just shut down; but it very powerfully suppresses the immune system.  The many drugs based on anti-CD molecules are easily identified by the fact that they all end in the suffix -mab.  The major disadvantage of induction therapy, despite allowing prednisone-free regimens and helping patients accept incompatible organs for transplant. is that it causes a very high rate of lympathic cancer over the years following the transplant, which is extremely difficult to treat successfully.

Prenisone is not a nephrotoxin like most of the classic calcineuron inhibitors (i.e., cyclosporine and its family), but would only very indirectly harm the kidney by raising blood pressure and causing diabetes.

Sounds like I'm getting one of those anti-CD molecules. Rituximab?

[stauffenberg]

Yes, that is also one of the monoclonal anti-CD antibodies.  But it causes no increased risk of lymphoma, and has in fact been used to treat lymphoma.  It has other negative side effects, though, but most of these occur only with the initiation of therapy.

[spacezombie]

Yes, that is also one of the monoclonal anti-CD antibodies.  But it causes no increased risk of lymphoma, and has in fact been used to treat lymphoma.  It has other negative side effects, though, but most of these occur only with the initiation of therapy.

Well, I hope that I don't stop breathing! This is good to know, however, since I know to make sure that someone is watching me when therapy is started. I'll let you know how it goes.

[Deanne]

Sorry -- this might be a thread-hijack!

If you're known to have had steroid-induced diabetes, would they be less likely to use a steroid regiment for a transplant? I'm still pre-ESRD, but I've considered refusing a transplant just because of the steroids. I was on prednisone to treat my FSGS a few years ago and ended up in the hospital with a blood sugar level of 1500 (that's not a typo). They were surprised to see me walk in under my own power.

[Chris]

Sorry -- this might be a thread-hijack!

If you're known to have had steroid-induced diabetes, would they be less likely to use a steroid regiment for a transplant? I'm still pre-ESRD, but I've considered refusing a transplant just because of the steroids. I was on prednisone to treat my FSGS a few years ago and ended up in the hospital with a blood sugar level of 1500 (that's not a typo). They were surprised to see me walk in under my own power.

I also had a blood sugar that high, 1800 and still able to move, but very very difficult. Started due to an insulin pump problem at school and then trying to walk to an office to get help is the very short story of it.The ER doc took my blood three times to make sure it was 1800 something to finally start an insulin drip and get me to ICU.

[stauffenberg]

In diabetics with normal renal function, the kidneys set a limit to how high the blood sugar can get, since they draw off excess sugar from the bloodstream and excrete it in the urine.  As a result, it is unusual to find a diabetic with a blood sugar higher than 600 to 800.  The extremely high blood sugar values can only be reached in diabetics with little or no renal function, since then there is no kidney to skim off the excess sugar and excrete it in the urine, and this is no doubt why the average clinician would be surprised at such a high value at 1800.

You can always request a steroid-sparing regimen post-transplant, though this increases the risk of rejection and involves the use of more toxic immunosuppression from other drugs.  Generally, nephrologists seem remarkably ready to tolerate their transplant patients developing diabetes, and 25% of all Black transplant recipients will develop diabetes from their immunosuppressive medications within one year post-transplant.

[Nan]

I just had my three month check up with my neph at the transplant center two days ago.  He took me off Bactrim and my trouches.  I am at 5mg of prednisone, I will continue this dose for the rest of my life.  My blood sugars have been high, I give myself a long lasting insulin shot at night, I had been giving myself four shots a day, it's slowly getting easier.

[migaguiar]

The truth is i had an old fashioned Dr. which at times made me happy and at others upset me.
After reading all the problems with prednisone I slowly began to lower myself off of it.
This was after 3 years of feeling crappy from it. I could tell which medicine was doing what to me.
Prednisone, Immuran (more old fashioned crap) and Sandimmune (cyclosporine), in that order, were major
players for me feeling crappy.

I took off 2.5mg of Pred every 4months until i got to zero and kept telling my Dr. yeah yeah sure Im taking
5mg a day. Yes, thank you i feel like crap. Whats next?

So soon after I slowly took myself off of Immuran as well.
All the while my labs were good.

The cyclosporine I dared not touch myself. That I had to negotiate with my Dr. like i was fighting for my life.
I was getting a ton of tingling and weakness feelings in my legs hands lips when the dose was to high and it
became toxic.

In all my kidney lasted 14 1/2 years. the first 3 were horrible until i made my own adjustments. the next 11 were great.
If my adjustments had any bearing on my kidney as far as length of its life I would still do it all over again because its about the quality not
the quantity.

If i had done what my Dr. expected i would have had 20 miserable years or less if he ever caught up with science.

I think this site has given me more confidence then before so next time i have a transplant I will not go behind my Dr.'s back. I will directly
challenge him to do whats right for me. 

[MIbarra]

Nan,

I understand about the insulin injections. I wasn't on any before the transpant -- no meds either. Now I do two doses -- on in the AM, one at night. They took a while to get used to, but I prefer those tiny little 31 guage needles over the 15's any day! 

[Chris]

I just had my three month check up with my neph at the transplant center two days ago.  He took me off Bactrim and my trouches.  I am at 5mg of prednisone, I will continue this dose for the rest of my life.  My blood sugars have been high, I give myself a long lasting insulin shot at night, I had been giving myself four shots a day, it's slowly getting easier.

What are trouches?

[willieandwinnie]

Chris, trouches are lozenges used to threat thrush. I think most of the time they use Nystatin that you have to swish around and swallowed. The lozenges are sucked, dissolved in the mouth, and swallowed. Hope this helps. 

[Chris]

Chris, trouches are lozenges used to threat thrush. I think most of the time they use Nystatin that you have to swish around and swallowed. The lozenges are sucked, dissolved in the mouth, and swallowed. Hope this helps. 

Ahhhhhhhhh, Nystatin I know. I was on that for awhile. Wonder if I should stilll be on that, but haven't had it in over 7 years. Will have to ask the transplant center when I see them in June.
Thanks.