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.

Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 28 6:49pm
In reply to @krsti "The liver transplant was the solution to the Celiac situation. Even though the internet tells you..." + (show)
@krsti

The liver transplant was the solution to the Celiac situation. Even though the internet tells you it does not happen that way, my Dr at the Mayo said it happens all the time. Amazing!

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@krsti, I always choose to believe my Mayo Transplant Team over and above anyone else! I'm happy that this was an option for you.
I can understand how you must be enjoying your new diet, and I feel quite certain that it is why you are now struggling to control your weight. I don't have celiac, but I remember how good everything tasted to me after my transplant. Plus there was no more nausea. I'll never forget the piece of buttered toast that I had for my first breakfast, and it was heavenly! Thanks for the memory:-)
Kristi, I had my transplant at the Rochester Mayo. Where did you get your transplant?

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1 reply
krsti | @krsti | Jan 28 8:49am
In reply to @rosemarya "@krsti, I have located a link to information about the Mayo Clinic Diet. I can understand..." + (show)
@rosemarya

@krsti, I have located a link to information about the Mayo Clinic Diet. I can understand your husband's hesitancy about considering a diet plan. However the Mayo Diet Plan is actually a plan/strategy for healthy lifestyle that offers sound nutritional information along with help[ful recipe modifications - and encourages/teaches good eating habits. In fact, your husband will learn (as did my husband) that it will benefit him, too!

I saw this and want to share it with you and with anyone else who is wondering what the Mayo Clinic Diet is all about. It was posted on the Mayo Clinic News Network on January 5, 2024
- Mayo Clinic Minute: Weight loss and willpower
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-weight-loss-and-willpower/
.
I hope that you will gain some insight from this information.

Kristi, I am curious as to how you were celiac before the surgery, and am not now. It is something that i am not familiar with. Would you care to share what occurred to change this for you?

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The liver transplant was the solution to the Celiac situation. Even though the internet tells you it does not happen that way, my Dr at the Mayo said it happens all the time. Amazing!

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 22 10:08am
In reply to @krsti "Thanks for giving me that link. And yes, I did talk with the nutritionist, but it..." + (show)
@krsti

Thanks for giving me that link. And yes, I did talk with the nutritionist, but it was mainly when I needed to gain weight. I was about 40 lbs under what I needed to be. But now I am 60-70 lbs OVER what I should be. Altogether, I have put on 100 lbs since I came out. Again, I did need to gain, but I can't seem to stop this. I was Celiac before the surgery, and am not now, so curbing my love for real bread is tough, lol. I will contact them today. I talked to my hubby last night about the Mayo diet, and he is cautiously on board. Thank you very much for your support.

Jump to this post

@krsti, I have located a link to information about the Mayo Clinic Diet. I can understand your husband's hesitancy about considering a diet plan. However the Mayo Diet Plan is actually a plan/strategy for healthy lifestyle that offers sound nutritional information along with help[ful recipe modifications - and encourages/teaches good eating habits. In fact, your husband will learn (as did my husband) that it will benefit him, too!

I saw this and want to share it with you and with anyone else who is wondering what the Mayo Clinic Diet is all about. It was posted on the Mayo Clinic News Network on January 5, 2024
- Mayo Clinic Minute: Weight loss and willpower
https://newsnetwork.mayoclinic.org/discussion/mayo-clinic-minute-weight-loss-and-willpower/
.
I hope that you will gain some insight from this information.

Kristi, I am curious as to how you were celiac before the surgery, and am not now. It is something that i am not familiar with. Would you care to share what occurred to change this for you?

REPLY
1 reply
krsti | @krsti | Jan 17 7:54am
In reply to @rosemarya "Hi, @krsti. I am happy to hear that you are doing well! That is a great..." + (show)
@rosemarya

Hi, @krsti. I am happy to hear that you are doing well! That is a great way to begin the new year, isn't it? Like you, I am still amazed at the entire transplant process and I feel so blessed to have been given 15 years of life because of my anonymous donor. I still get very emotional when I think about what could have been...but since transplant I have been able to resume my favorite activities with an annual trip to Mayo Rochester for check-up.

Weight gain is a constant challenge for me, too. After transplant I needed to gain weight because I was skin and bones. I met with a nutritionist during one of my Mayo visits and that was a big help for me to adjust my food choices. I also discovered and purchased the Mayo Diet Plan Book in the Mayo Clinic bookstore and use the healthy eating plan as my guide.

As I was looking for information to share, I came upon this article from the Transplant Blog Newsfeed. I read that for liver transplant patients, "One study showed a median weight gain of 11.24 pounds at one year after liver transplant and a 20.94-pound weight increase three years after transplant." Here is the link for more information:
- Weight Gain After Transplant: Where Does it Come From and How to Get Rid of It
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/weight-gain-after-transplant-where-does-it-come-from-and-how-to-get-rid-of-it-2/
Krisit, Have you ever consulted with a nutritionist while at Mayo?

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Thanks for giving me that link. And yes, I did talk with the nutritionist, but it was mainly when I needed to gain weight. I was about 40 lbs under what I needed to be. But now I am 60-70 lbs OVER what I should be. Altogether, I have put on 100 lbs since I came out. Again, I did need to gain, but I can't seem to stop this. I was Celiac before the surgery, and am not now, so curbing my love for real bread is tough, lol. I will contact them today. I talked to my hubby last night about the Mayo diet, and he is cautiously on board. Thank you very much for your support.

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | Jan 16 9:09am
In reply to @krsti "Hi there! I was transplanted in 2022 at the Phoenix campus. And I am doing really..." + (show)
@krsti

Hi there! I was transplanted in 2022 at the Phoenix campus. And I am doing really well. no complications, knock on wood, and I am still amazed. The only thing that is off is this darn weight gain! 2009! That's amazing! Congratulations!!! How are you doing?

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Hi, @krsti. I am happy to hear that you are doing well! That is a great way to begin the new year, isn't it? Like you, I am still amazed at the entire transplant process and I feel so blessed to have been given 15 years of life because of my anonymous donor. I still get very emotional when I think about what could have been...but since transplant I have been able to resume my favorite activities with an annual trip to Mayo Rochester for check-up.

Weight gain is a constant challenge for me, too. After transplant I needed to gain weight because I was skin and bones. I met with a nutritionist during one of my Mayo visits and that was a big help for me to adjust my food choices. I also discovered and purchased the Mayo Diet Plan Book in the Mayo Clinic bookstore and use the healthy eating plan as my guide.

As I was looking for information to share, I came upon this article from the Transplant Blog Newsfeed. I read that for liver transplant patients, "One study showed a median weight gain of 11.24 pounds at one year after liver transplant and a 20.94-pound weight increase three years after transplant." Here is the link for more information:
- Weight Gain After Transplant: Where Does it Come From and How to Get Rid of It
https://connect.mayoclinic.org/blog/transplant/newsfeed-post/weight-gain-after-transplant-where-does-it-come-from-and-how-to-get-rid-of-it-2/
Krisit, Have you ever consulted with a nutritionist while at Mayo?

REPLY
1 reply
krsti | @krsti | Jan 8 8:16am
In reply to @rosemarya "@krsti, Hi and welcome to Connect. I think it is wonderful to see that you are..." + (show)
@rosemarya

@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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Hi there! I was transplanted in 2022 at the Phoenix campus. And I am doing really well. no complications, knock on wood, and I am still amazed. The only thing that is off is this darn weight gain! 2009! That's amazing! Congratulations!!! How are you doing?

REPLY
1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Jan 7 9:08pm
In reply to @mwb37 "This is 2Ma3WbMc. A member of my family was retransplanted on June 20, 2013 (first liver..." + (show)
@mwb37

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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Hi @mwb37, it sounds like you are worried for your family member and distressed at the lack of clear answers. If you would like to get a second opinion from a Mayo Clinic expert, you can submit a request here: http://mayocl.in/1mtmR63

If I understand your post correctly, your questions to fellow liver transplant recipients are
- How long did you take immuno-suppressing medications to prevent liver rejection?
- What is the standard amount of time?
- Did immunosuppressants cause kidney damage?

Do I have that right?

REPLY
gap | @gerryp | Jan 7 2:15pm
In reply to @rosemarya "Hi, @gerryp. I thought that I would pop in for a minute to admit that I..." + (show)
@rosemarya

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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Thank you Rosemary. The more I research this the more I learn about the impact of different medications. I was on dialysis when I went into organ failure early on - and I don’t really want to have that in my future if I can at all help it. So I ask questions but I don’t really get good answers. This was the first post that l saw where someone had made the switch in medications. I don’t want to second guess my wonderful docs but I also recognize that we have to advocate for ourselves.
I do try to attend the weekly Zoom meetings. This group provided me with so much hope when I was so very ill. The least I can do is try to pay it forward. I wish I had known you were on the calls! So many of the participants are unaware of the MayoConnect blog. I find it super helpful and have promoted it on the support group calls. Please let me know when you are on the call next time if you see me there. Thanks for all your great counsel on the connect site. Gerry

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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!

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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

REPLY
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?

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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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