Is anyone on just 2 immunsuppressants?I'm on 2 right now 5mg pred and once a month iv infusion of belatacept.
I was taken off mycrophenolate a month ago to help combat a CMV infection and my bloodwork numbers are good my creatinine had gone up some but last test had dropped again and my last rejection test a month ago showed none .
My doctor wants me to start rapamune(sicrolous) but I do not really want to as after being on iv forscanet for 3 months to fight the cmv,it trashed my guts,digestive systems abd electrolytes.Now im finally just getting things back to feeling better im not really wanting to start on another drug with side effects as all through this transplant process Ive had a horrible time with side effects.
So anyone else doing good on just two immune suppressants?
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Hi there. Yes, I am on only 2. 1mg of tacro 2x per day and 360mg of myfortic 2x per day. Have CMV and some low neutrophil issues but that is fixed with a Neulasta shot whenever things get too dire. Thwre was talk of lowering the Myfortic dose or the Valcyte but the dr doesnt seen to keen on either of those options and the shot works so we havent gone that far yet.
I'm on just belatacept infusions and 5 mg of prednisone. I was on tacrolimus and mycophenolate (& prednisone) immediately following my transplant, which was October of 2019. In December I was taken off the mycophenolate because of leukopenia, and never restarted.
After two year of wildly variable tacrolimus levels, I was switched to once a day Envarsus. It didn't really help. My levels were still all over the map. In over 90 blood draws in three years, only 12 were in my target range. I had labs and dose adjustments every other week, and the side effects were horrible. It made me wonder, what have I done? Why did I agree to a transplant?
After three years of misery, my doctor agreed to give the belatacept a try (October of 2022). It has been a total game changer! The only side effect I have from the infusion is fatigue the day of treatment. (Granted, it could also be the traffic I have to negotiate getting to the UW in Seattle, as we are reported to have the second or third worst traffic in the nation, but I digress.)
My creatinine has dropped almost a full point, and I've been able to get off insulin for the Type 2 diabetes that got worse after transplant. I asked about if I would ever restart the mycophenolate and he said no. I'm doing very well on just Belatacept and prednisone. But this is my story. You need to listen to your team and follow their advice, or get a new team, in my opinion. They have a lot more experience in transplants than I do, so I need to trust their professional opinion. Best wishes to you! ☘️
I hear you on the belatecept,zero side effects and creantine levels improved 30! Well you are on what i am now of the 5mg and once a month bella, so good to know.As for trusting my team a big no on that, i could write a book on their misteps and I'd be dead if I hadn't listenend to my gut and questioned and got ideas from this forum.
I am 5 years into my transplant and take 2 mg Tacro and 500 mg mycophenolate twice a day. Same drugs since the transplant, just at lower doses now. Swapped the mycophenolate for Prednisone to deal with a BK virus episode and a UTI, then back to the mycophenolate. I get along with those drugs pretty well, though not everyone does. Good luck.
I take the same exact meds (without the prednisone swap). I suspect someday I may be switched from tacrolimus because it's causing low-level type 2 diabetes and, ironically, is nephrotoxic. But it's been 14 uneventful years so maybe not.
I am 2 years post-transplant. For the past 6 months or so, I am only on ONE immunosuppressant - Tacrolimus ( Prograf). Iexpect to stay on only one for my lifetime.1mg in the AM - 1 mg in the evening.
Wow I haven’t had transplant yet on the list but most people I know are on lots more I head about 10 to 12 did you start out with a lot more how common is it for people to only be on a few I see reply to you that other are on a few I just want to know if y’all had to start out on alot more I know my brother had his transplant 12 years ago and he is still on about 10 . Is it common for so many to mess up for gut ?
I started out on tacro,mycrophenolate,pred high doses(all immune suppressents and then anti viral valganclovir and anti viral sulfatrim and vitamen d.yeah i needed a chart at first to take what when and the weeks to start deducing and yes they are brutal on the guts!especially as i have ibs to start off with.
As far as anti-rejection meds, I was only put on three post transplant: Myfortic, Prograf, and Prednisone. But I took several capsules of both Myfortic and Prograf daily. If you counted by capsules taken daily it would have been 10 “pills” taken daily immediately following my transplant. But, again, only three different meds taken.
Now I take two different meds: Prograf (Tacrolymous) and Prednisone. Tacrolymous I’d 3.5 mg daily. Prednisone is 5mg daily. I was bc pulled off Myfortic to deal with ongoing CNV issues. It won’t be restarted,
I’m about 17 months post transplant now. It’s been a rocky road; however, these past 2 weeks have been much better. I’m finally feeling consistently decent. I’m no longer dizzy when standing ir walking. My strength is finally more consistent. I’ve been sleeping better and so forth. I do see elevations in my glucose levels (I wear a continuous glucose monitor nie) after both my morning and evening meds. I’m hoping my nephrologist will consider shifting from tacrolymous to the injections specifically to help with diabetes management but I’m not sure how successful that discussion will be…
I am 24 + years post-transplant and take Myfortic and Neoral twice daily. I was able to stop the Prednisone about 10 years ago. Just had my labs this week and my creatinine was 0.8.
First of all let me say this - I had an unusual transplant with an incompatible blood type. I’m blood type B and received a blood type A kidney. I agreed to get a shorter wait time. This means I have a greater risk of rejection, and death. The reason they could do this is because I had absolutely no antibodies. As you may know, you make antibodies by having a blood transfusion, having a pregnancy, or a previous transplant - basically your body has seen foreign tissue before. Not every transplant center does ABO incompatible transplant. I only matched 2 of the 6 antigens on the cadaver donor. Not antibodies means I will never have T-cell rejection, which is the hardest to treat. I can still have B-cell rejection. Don’t ask me to explain, my doctor tried but it was too complicated for me to understand.
I am on three. I could not tolerate tacrolimus it gave me neurotoxicity. Bad tremor, bad balance, and cognitively symptoms sort of like dementia - I constantly asked people to repeat what they had told me minutes before, no short term memory at all, also was confused about things. They put me on cyclosporine instead.
I was put on 20 mg prednisone right after the transplant which they reduced to 15 after 2 weeks, then 10 after two more, and then 5 mg. I’ve been on it since then, they say it would be extremely dangerous to stop it and risk rejection.
I was on cellcept right after transplant too. I started having a lot of nausea so they switched me to myfortic, which is supposedly the same drug, mychophenelate, only a different form.
So I’ve always been on three drugs to prevent rejection.
Having said that, at one point I developed what is known as neutrophil fever. Basically my body cried “uncle” and my immune system went down to almost nothing, over a two week time. It was very very serious. They hospitalized me to look for a cause, but after 5 days of blood test after blood test, they determined it was just my body’s response to immune suppression. They gave me a medicine called Zarexio (Probably misspelled) which causes your body to make white blood cells. It was quite scary but they said it happens.
Then it happened a second time. This time they told me to hold the myfortic for one week, and start the injections again. My white count came up quicker and after only 3 days, i went back on myfortic.
Transplant is HARD. My doctor told me this. The drugs are hard to adjust to. They don’t tell you this ahead of time. Most people have a lot of trouble, only a few have it easy.
I wish I was on belatacept. I can’t have it because I’ve never had the Epstein Barr virus, even though 90% of the population has. I could end up with a rare cancer. Cyclosporine is actually toxic to your kidneys, sometimes more than others. Belatacept actually improves kidney function over time. Please count yourself lucky you can have it.
I believe valcyte is an anti-fungal preventative medicine and they stopped it after 6 months as was that transplant center’s standard. I hadn’t heard it was immune suppressive, however, remember that even though I consider myself very well informed, I could be wrong.
I had so many problems with all the drugs, one day they had the transplant pharmacist come in to talk to me which is rarely done.
I have always heard that if you have CMV or BK, they will lower your immune suppressive drugs to help your body fight it off. BK will kill your kidney. CMV will kill you, period.
Ask your doctor, please, if you can take a probiotic which could help your gut flora. They said I could have florastor and I did. Don’t take any supplements or any prescription or over the counter meds without checking with your team.
It sucks to have to try new meds. It’s harsh. I’m sorry. Hang in there. It does get better. That’s what everyone loves to tell me, other patients, doctors.
My transplant center shares an online support group with another center for transplant patients so every week I get to hear what other people are going through. Some are recent transplants, some are one or two years out. One guy is on his third transplant. I encourage you to look around for one. Caregivers are also welcome. It’s moderated by a social worker.
Yes, I’ve been on mycophenolate and Sirolimus only for years ( I’m 27 years out of transplant. My function has been stable for 2 years but I’m at Stage 4 CKD. I agree with you
the more meds you take the worse side effects. I opted for quality of life AND I still have my kidney!
Hi, I’m now 1 year out from transplant. I’m taking Envarsus(tacro) 4mg and 2.5 mg Sirolimus once a day. I originally was taking envarsus and myfortic but had horrible bouts of cramping with bloody mucus for weeks at a time so they switched me to sirolimus. GI issues are better but still intermittent mild bouts of cramping so I suspect the tacro is playing a part in it. The Sirolimus side affects of mouth ulcers were pretty painful in the beginning (and due to the GI issues and mouth ulcers I have lost weight that I’m trying to gain back without much progress.) The only thing the transplant team offered for the mouth sores was magic mouth wash-a band aid but these things would grow to the size of shirt buttons and go on for six weeks at a time. Finally, someone from this group recommended a steroid paste and mouthwash which I informed my doctors about and this was a game changer! I also try to limit acidic foods and sugar as these seem to trigger them. Sirolimus is supposed to be less likely to cause cancer so for that reason I don’t mind it.
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