1. < Transplants

Transplant anti-rejection medications. What's your advice?

Posted by jolinda @jolinda, Apr 23, 2020

Weight gain? Hair loss? Headaches? Never missed a beat? What has your experience with transplant medications been? Have you developed a methods to deal with a side-effect? Have your meds changed at all over time? What advice do you have for others in our community that may make their experience better?

Interested in more discussions like this? Go to the Transplants Support Group.

jmp1234 | @jmp1234 | Jan 7 11:45am
In reply to @krsti "From what I was told, the cannabis interferes with the Tacrolimus. Since it's your anti-rejection drug,..." + (show)
@krsti

From what I was told, the cannabis interferes with the Tacrolimus. Since it's your anti-rejection drug, I wouldn't mess with it... Best of luck though and good luck on the list!

Jump to this post

Ty for the feedback and response. I follow all protocols as per my care team at mayo in jacksonville. I posted the topic to get folks personal experiences, unlike usual social media posts seeking info from things folks heard or read etc...
All feedback here has been appreciated and I am closing the conversation. Ty again for your response and I feel very confident of being on the waiting list within 3 weeks. Ty

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gratefulbob | @gratefulbob | Jan 7 11:32am
In reply to @rosemarya "I take cellcept and tacrolimus for my liver and kidney transplant. I used to take a..." + (show)
@rosemarya

I take cellcept and tacrolimus for my liver and kidney transplant. I used to take a low dosage of prednisone per researched evidence related to my situation for several years.
While most people complain about prednisone, I experienced a positive effect! I have an autoimmune condition, Vitiligo, that produces patches of nonpigmented skin and premature white hair. I noticed that within a couple years after my transplant that my skin was an almost even skintone with no white areas. That was a pleasant surprise! When I was tapered off prednisone a few years ago, the vitiligo began to show up on my skin again. .

Anybody have a similar experience?

Jump to this post

This is really interesting. I had the exact same experience. My vitiligo has not disappeared but has improved dramitically. Vitiligo is due to an auto-immune response so I think the anti-rejection meds must tame down your immune system from attacking the pigment producing melanocytes.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 7 10:09am
In reply to @krsti "Hey there blbird33! I take Citalopram for depression, and it melds just great with all of..." + (show)
@krsti

Hey there blbird33! I take Citalopram for depression, and it melds just great with all of our other meds. I am post liver transplant about 18 months . Good luck! I have also had a suggestion of Holy Basil tea, but I haven't tried that yet. Word from the Mayo was that it should be ok, but if it starts to affect the tacro levels, then it's a no go. Hope this helps!

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@krsti, Hi and welcome to Connect. I think it is wonderful to see that you are 18 months post liver transplant!
I received my transplant at Mayo Rochester in 2009. Which Mayo were you transplanted?
How are you doing now that you have a year of post transplant living?

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1 reply
mwb37 | @mwb37 | Jan 7 10:06am

This is 2Ma3WbMc. A member of my family was retransplanted on June 20, 2013 (first liver transplant was in 2003!), and has been on dialysis twice a day for 6 months.
The gigantic trauma after liver transplantation is the merciless number of immunos & co (Pantaprozol, Bactrin, Magnem and other nephrological drugs) prescribed, almost 15!!!. Among which 3 immunos!!!, the infamous TACROLIMUS (which caused severe kidney failure before the transhepatic, forcing it to be reduced to half a pill a day), the kidney killer, according to the Internet, with a prescription NOW for 5 pills a day !!! (vixe!). The other immunosuppressants taken are Prednisone, Mica-phonolate and Prograf.
In a layman's way (I'm an economist, a digital rat...) I searched the web to see if I could interfere in this Circus of Horrors, and I discovered that my country's Ministry of Health RESTRICTS the prolonged use of this immuno-suppressant for prophylaxis of liver rejection.
Of course, I was stunned and didn't know what to do, which led me, here and now, to beg for some kind of humanitarian help, specially from the members of the Support Group (as you are essential, God bless each one of you), and the Moderators of the Mayo Clinic, to at least tell us what Protocol is used, in the USA, in situations analogous to this situation above, of course without any INTERCORRENCE with this case.

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1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 7 9:53am
In reply to @gerryp "Good morning. I am just about 2 years post liver transplant - and have CKD stage..." + (show)
@gerryp

Good morning. I am just about 2 years post liver transplant - and have CKD stage 2. How long were you on Tacrolimus before they changed you to Everolimus? Are you treated at Mayo or some other hospital? My creatinine numbers are OK, but GFR is in the 60’s. I have been trying to get my Mayo team to reduce my tacrolimus dosage as I don’t want a kidney transplant in my future. I currently take 2mg twice a day and my blood level trough is in the 4-6 range. Thx for your help & experience as a 11+ year survivor.

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Hi, @gerryp. I thought that I would pop in for a minute to admit that I have no experience to share about changing to a different antirejection medication. I have been on Tacrolimus for nearly 15 years along with Cellcept. Prednisone was eliminated by kidney dept after 5+ years. One thing that I have had the good fortune of experiencing is how closely the liver transplant team and the kidney transplant teams operate for our best outcome. I remember that I had questions (and frustrations) about my Tacrolimus and prednisone. I found out early on that what is good for one organ is not necessarily best for the other. I can also remember that each team would explain their decision based on current research along with my current lab levels.
I guess what I'm trying to say is that I encourage you to keep on asking questions. I think I saw you on one of the zoom support sessions, so I know you are in good hands at Mayo.

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1 reply
krsti | @krsti | Jan 7 9:20am
In reply to @blbird33 "Beracha, thank you for the info. I am a year post transplant and still dealing with..." + (show)
@blbird33

Beracha, thank you for the info. I am a year post transplant and still dealing with tacro med ups and downs. And it greatly increased my anxiety. I am now at 2.25mg with levels at 5.6 and I do not want to go any higher in dose. I am also asking to talk with the CPMC psychiatrist to find a med that is ok for my kidney and good to reduce anxiety and depression that have come on since the surgery. Anyone else on anti-anxiety or anti-depressants since the surgery? Which meds are recommended? Hope you feel better and stabilize soon. I have lost hair too and it remains thin. I think my life is just different since the surgery and God is taking care of it all for my new life. I trust God and have deepened my faith to get me through and be grateful. Take care, BB

Jump to this post

Hey there blbird33! I take Citalopram for depression, and it melds just great with all of our other meds. I am post liver transplant about 18 months . Good luck! I have also had a suggestion of Holy Basil tea, but I haven't tried that yet. Word from the Mayo was that it should be ok, but if it starts to affect the tacro levels, then it's a no go. Hope this helps!

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1 reply
krsti | @krsti | Jan 7 9:16am
In reply to @jmp1234 "I am still waiting to finish last of my pre testing. Cardiograph in 2 weeks and..." + (show)
@jmp1234

I am still waiting to finish last of my pre testing. Cardiograph in 2 weeks and all done. If 70 or below I was told immediate spot on waiting list for the new liver. No post op experience here, but I hope to get my medical cannabis back from legal and licensed dispensary.

Jump to this post

From what I was told, the cannabis interferes with the Tacrolimus. Since it's your anti-rejection drug, I wouldn't mess with it... Best of luck though and good luck on the list!

REPLY
gap | @gerryp | Jan 7 7:54am
In reply to @dglass4040 "I take none , I got my mayo doctor to move me to Everolimus, which was..." + (show)
@dglass4040

I take none , I got my mayo doctor to move me to
Everolimus, which was a great result

Jump to this post

Good morning. I am just about 2 years post liver transplant - and have CKD stage 2. How long were you on Tacrolimus before they changed you to Everolimus? Are you treated at Mayo or some other hospital? My creatinine numbers are OK, but GFR is in the 60’s. I have been trying to get my Mayo team to reduce my tacrolimus dosage as I don’t want a kidney transplant in my future. I currently take 2mg twice a day and my blood level trough is in the 4-6 range. Thx for your help & experience as a 11+ year survivor.

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1 reply
jmp1234 | @jmp1234 | Jan 6 11:03am

I am still waiting to finish last of my pre testing. Cardiograph in 2 weeks and all done. If 70 or below I was told immediate spot on waiting list for the new liver. No post op experience here, but I hope to get my medical cannabis back from legal and licensed dispensary.

REPLY
1 reply
Dik Glass , liver transplt 8/4/11 | @dglass4040 | Jan 5 5:19pm
In reply to @myfablife "Hi how much do u take of your myfortic Prograf. after 11 years😊" + (show)
@myfablife

Hi how much do u take of your myfortic Prograf. after 11 years😊

Jump to this post

I take none , I got my mayo doctor to move me to
Everolimus, which was a great result

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1 reply
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