I Hate Dialysis Message Board
Dialysis Discussion => Dialysis: Transplant Discussion => Topic started by: MIbarra on May 03, 2008, 07:20:03 AM
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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!
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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.
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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.
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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). :rofl;
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Off Bactrim at six months and off valcyte now too. Yeah two less meds !
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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.
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I was off Bactrim after 6 months, but never was on prednisone.
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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.
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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?
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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.
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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.
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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.
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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.
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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?
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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.
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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.
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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.
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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.
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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.
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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.
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The truth is i had an old fashioned Dr. which at times made me happy and at others upset me.(http://bp2.blogger.com/_Jwtf0d-P360/SCs8YirL28I/AAAAAAAAAO8/UQczttANHTw/s1600-h/3C3149.preview.jpg)
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. :boxing;
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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!
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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? ???
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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. :cuddle;
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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. :cuddle;
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.
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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.
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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.
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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.'
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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.
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i just had my transplant a week ago and i am on 5 Rapamune, 30 mg Predisone, and 2160 mg Myfortic.
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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.
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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!
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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.
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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.
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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.
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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.
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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 :2thumbsup; but this prednisone for life is awful. I can't stop eating! :banghead; 20lbs. came outa nowhere!
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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!
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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.
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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.
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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.
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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.
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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
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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.
:thx;
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To that other doctor and his damned steroids :Kit n Stik; :sir ken; :Kit n Stik;
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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.
:thx;
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)
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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!
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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.
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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.