Transplant Meds- Anti-rejection

[danhtruitt]

Hi all- hope all is well with you. I received a Transplant donation from my mom in 2021 and I am beyond grateful and full of love. I am making a post about Transplant meds because my gut feeling is that my doctor may not be understanding my questions correctly. I know the most popular ones are Cellcept and Prograf and beletacept infusion. I've heard from ppl that they only take very minimal of one or the other. My doctor has me on both and feels like a higher dose still. Trust me I understand the levels and where they should be and so on so forth. What I was hoping to hear is from other Transplant recipients on what level of meds they are on. I currently do cellcept 500mg twice a day and beletacept infusion once a month. Please share with me your meds and how much. I am trying to gain full perspective on long term living. Thank you all so much. Much love ❤️

[LisaSnow]

What you are currently on sounds already pretty minimum to me. What are your concerns?

[Yankcg70]

Well if it is any hope for you, i have been off all transplant meds for about 10 years now with the assistance of my kidney dr. I have had my deceased donor transplant for 34 years now without issue. I personally feel that as the yearz go by drs need to be open to limiting if not taking the chance of totally stopping them especially in thos that are live donor familial matches. They are not good for your body in the long run and are expensive. Also truth be told i am sure there are many who have done this on their own..something i do not recommend but i get the reasoning.

[metalminded in reply to Yankcg70]

Wow! You don’t take anything at all? What did you take?

[Balap]

I'm on Steroid, Cellcept and Prograf for past 10 years

[OperationKidney]

Hi there fellow warrior! Your doc probably has a good reason to keep you on a higher dose, but you can always try for a second opinion from another nephrologist. Everyone is different and there are, as I'm sure you understand, many different factors that determine how much medication a person should be on. Personally I would ask your doc about Envarsus Tacrolimus as it's only a once a day med. I'm about four years out from transplant and down to 3mg a day. Wishing you all the best the further out from transplant you get, and much love to you and your mom!!

[Denise-80]

Hi Danhtruitt - I’m on Bela, pred (5 mg) and sirolimus (2-3 mg/d), with a sirolimus level targeted at 8. I am 9 years post-tx. My understanding from what I’ve been told is that you have to be at a lower risk for rejection to be considered for bela at all, as it is considered more gentle and is reportedly associated with higher rejection than tac regimens. When I asked about myfortic vs sirolimus, I was told I would need the full dose of myfortic (1,500 mg/d) with Bela; myfortic and cellcept are similar.

I have asked about Bela monotherapy, but was told no. Even though they tell me I’m at a low risk for rejection, they’ll not consider it at this time. I’m okay with that.

As you know, I’m a patient…not a doctor….and this is only what I’ve been told by my team…other centers will likely have other opinions.

I hope this helps. Wishing you the very best.

D

[Palmtreeguy]

I am 1.5 year post-transplant. I take 2.5 mg of Tacrolimus ( and Metformin, which may end soon)). Sounds like your dosages are on the minimum side.

[Blue-Quilter]

According to my team, if you're on the belatacept infusions, myfortic (mycophenolate) and prednisone are standard go-withs unless you have an extenuating circumstance. I'm 3.5 years out and have been on tacrolimus 2x daily and Envarsus 1x daily, both with wildly erratic levels, hence the switch to belatacept six months ago. I had to stop the mycophenolate about two months after my transplant because I got neutropenic. I asked about restarting it with the belatacept, but my doctor didn't think it would be wise, given the three year history of infections and other issues I've had. The bottom line is do your research, but trust your team. Best wishes!

[LavenderRabbit]

You are not on a high dose. 1000mg of mycophenolate twice a day is standard. I’m on 750mg twice a day. I also take the belatacept infusion monthly and prednisone.

[metalminded]

I have the BK virus and am on low doses to help my immune system fight it. I take 3 mcg of tacrolimus daily and 2.5mg of prednisone daily.

[Porter20]

I take 2.5 mg of prograf and 180 mg of myfortic in the am and 2.0 and 180 mg myfortic in the pm. 5 mg prednisone daily.

I like pills because no office visits monthly. My doctor started to change me to infusion of bellacept but I told her I work rather have the pills. She waited a month and my numbers came back down so nothing changed.

[rabbit75]

living donor (ruby 💛) transplant in 2004 - 1000mg twice a day of mycophenolate, 3mg AM of tacro and 2mg PM of tacro, and 5mg prednisone.

[LeslieK in reply to rabbit75]

I am on the same rejection meds. Do you feel

Nauseous? I am 2 post transplant so I’m not sure what is causing that. I also have a lot of drainage from surgery. Do you?

[rabbit75 in reply to LeslieK]

hi LeslieK, I had pretty bad nausea for the year or so following surgery but with that said, I have had nausea most of my life after being diagnosed with mpgn at age 12 (I’m now 47). All the meds and I think I hold my stress in my stomach. What do you mean by drainage? Sorry to hear you’re facing issues this…

[LisaSnow]

I would also like to point out that from clinicians' perspective, they really do "not" like it when a patient comes in telling them "I want to change/lower my meds/dose to *** because someone said online they are doing great on it."

While there are guidelines to what protocols to use give the stage and condition of transplant patient, each patient is unique (e.g, eitology of the kidney failure, infection history and status, HLA compatibility with the transplant organ, history of DSA, post op recovery situation, organ "grade" and patient's health factors) and requires individual treatment consideration. There is no way anyone other than your "own" treating physician knows what is the best balance for you at the given time. To use the protocol of an online transplant fellow to justify/demand modification of of your own treatment really puts doctors off. They know it is simply impossible to explain to you within the 15 to 30 minutes time they have with you how inappropriate that data is to show it should work for you.

[Darlenia in reply to LisaSnow]

Agree! My hubby has a transplant. We questioned some of our meds too and our regular nephrologist simply said the transplant team took everything under consideration - including his underlying condition and the match (not perfect) in prescribing the types and dosages of meds. He indicated that if my hubby ever went into rejection, very high post transplant antibodies and his age would very likely prevent him from ever receiving another transplant. We quickly accepted the status quo - it's simply not in our best interests to tinker with the status quo re his gift or go on record for an being obstreperous patient.

[LisaSnow in reply to Darlenia]

Sorry to hear about the high DSA. Doctors still find antibody-based rejection difficult to treat (compare to acute rejection) so it isn't too surprising to get the warning that he received. I am glad he is coping with the side effects and hope they get even milder everyday.

[Bunkin]

hi, I’ve had the same concerns as I’ve researched Tacrolimus side effects. I’ve had joint, nerve and muscle pain every day since month after transplant in 2021. I have addressed it with the doctor every time, they laugh it off. I’ve been to pain management, physical therapy, nothing helps. Then I started getting uti which I’ve never in my life had . After about 3 or 4 if those and more research I called the doctor and told him I wanted the Tacrolimus lowered. I had it lowered before by my coordinator and my numbers were awesome. He agreed and took off the half. No more UTI! I’ve learned that while I’m not a doctor, I know me! Now I take 1 Tacrolimus am and 1 pm, 4 mycophenolate and I separate them to avoid stomach problems and 5 mg if prednisone which I’ve begged to have them take me off of. One nephrologist said he would if no problems after a year which I had none. The other nephrologist said no. I am thinking of changing nephrologists. I do like him and respect him but I’d also like to at least try going off it. I feel one if these meds is causing my pain

[Denise-80 in reply to Bunkin]

Hi Bunkin - I agree, “I know me.” You have to be your own advocate and you have to ask questions and research. I hope they figure out what is causing your pain, and I hope you keep pushing until they do.

Best wishes,

D

[Bunkin in reply to Denise-80]

thank you!

[MKlug2015]

Each of us are unique individuals in terms of types and dosages of our immunosuppressive medications. Originally I was on tacrolimus and mycophenolate when I received my preemptive living kidney donor kidney transplant in 2015. Prednisone was added at 3 months due to dangerously low white blood cell counts. A couple of years ago when there was a tacrolimus shortage, I was changed to once daily Envarsus XR. I’m currently on 4mg prednisone, 2 mg Envarus at 9 am. 750 mg mycophenolate 9am and 9pm. I have a great transplant nephrologist that I’m comfortable in asking questions and who manages my transplant care well. I trust him completely. I’m thankful there isn’t only one medication and dosage regimen but rather immunosuppressives are tailored to the individual.

[Miracle3]

Hello I received my transplant in 2021 from MUSC. I take prednisone 2.5mg once a day, mycophenolate 750mg twice a day and tacrolimus 4mg in the morning and three at night. My doctor has increased and decreased my dosage a few times. Dosage change is normal. Since you have concerns, I would defiantly talk to your doctor again or ask for a second opinion.