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

I just found this "Connect" site tonight, and I have been learning so much, lol. I never thought to connect the getting-up-during-sleep to my Tacrolimus. I mean, I've had kids,and thought it was just part of aging. 🙄
I had a liver transplant 8 years and 2 months ago. I was able to dutch the Phoslo and Cellcept the first year. About 6 months post-transplant, I developed a microcellular ductopenic rejection, and received 5 doses of Thymol. I'm here to tell you the "'roid rage" is real! Because I had so many doses of steroids to manage the rejection, I developed steroid-induced diabetes. I finally got taken off Prednisone last week in order to help my blood sugar numbers. But Tacrolimus also raises blood sugar. I was on 4mg Tacro daily and 2mg of Sirolimus daily for over 8 years. Last week my Tacro was lowered 1mg and I'm now taking 4mg of Sirolimus daily. I love getting the medical monograph papers when I get my prescriptions, and Sirolimus is black-boxed. It also said, "Do not take Sirolimus if you've had a liver transplant ". It made me laugh, because I trust my medical team.
Apparently, my immune system is so robust that they really have to stomp it into submission!
I've was so terrified of covid in the beginning. I took 2 shots and 1 booster, but I'm not taking any more shots. I actually had covid last October. Had a headache day 1, nausea/vomiting day 2, nasal congestion day 3, and I lost my senses of smell/taste on day 4 which only lasted 4 days. That's it, no coughing or shortness of breath at all. I realize that since I don't often work outside the home I'm not exposed to a lot of people. I'm so very grateful to be alive!
Question: has anyone had to take Lisinopril for high blood pressure, and then have to stop it because of an allergy? I've never been allergic, or sensitive, to anything in the past. Except, now Lisinopril. My PCP told me to stop taking it 2 months ago because it would occasionally cause face and tongue swelling. And the coughing I thought was due to dust (I live in a rural area) was also due to a Lisinopril sensitivity. Who knew?
I apologize for the rambling, but this is my first experience with a transplant support group. Thank you.

This is why I love this group, you all validate things I thought were my own quirks! We can gripe to our doctors and nurses but they just read about side effects where we all live side effects. I don't get up so much at night as I did when I was first transplanted but I notice how frequently I need to "go" after taking my evening meds. My husband and I typically watch TV in the evenings and I have him pause our shows every 40 mins to use the bathroom after taking my meds. I always thought it was just me but I guess not. I also find myself much more thirsty after taking meds and I wouldn't ever want to restrict my liquids.

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!

@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/
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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?

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.

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?

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?

@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?

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.

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.