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.

jackie421blfdgurl | @jackie421blfdgurl | Nov 7 11:28am
In reply to @rosemarya "@abider, Good Morning and Welcome from another Mayo Liver transplant recipient! I am happy to meet..." + (show)
@rosemarya

@abider, Good Morning and Welcome from another Mayo Liver transplant recipient! I am happy to meet you here on Connect and I am interested in your participation in the clinical trial.
My transplant is actually a simultaneous liver and kidney transplant from an annonymous deceased donor at May Rochester in 2009 as a result of PSC. My immunosuppressant medications (Mycophenolate and Tacrolimus) have been working well for me now for 15 years with minor dosage adjustments that are guided by my labs and occasional increase of side effects.
While I was reading about your clinical study and your desire to reduce your tacrolimus, I am curious as to why or how you became involved in this study. Did you initiate this or did your transplant team refer you? Were you having bothersome side effects or are you looking to the future possibilities? Might I ask if you have any co-existing condition that would benefit from the potential switch? I look forwar5d to heating more of your experience with liver transplant.

Jump to this post

Hi. Ya all. Hi rose ary. Jackie here from joisey!!!
Hope all is well.
Prior to Halloween,
I was taking 4 mg of tacrolimus a day down from 6 a day. I now am off that drug but taking sirolimus 3 mg a day.i still have numbness in feet and legs. And bathroom issues ..I will see how all this goes after stopping that pill. October was 4 yrs for me.but last time I was on sirolimus I broke out with mouth soars.now I have to keep an eye on this too.i will mention the study to my liver Dr. Take care Rosemary

REPLY
1 reply
Mentor
Rosemary, Volunteer Mentor | @rosemarya | 5 days ago
In reply to @jackie421blfdgurl "Hi. Ya all. Hi rose ary. Jackie here from joisey!!! Hope all is well. Prior to..." + (show)
@jackie421blfdgurl

Hi. Ya all. Hi rose ary. Jackie here from joisey!!!
Hope all is well.
Prior to Halloween,
I was taking 4 mg of tacrolimus a day down from 6 a day. I now am off that drug but taking sirolimus 3 mg a day.i still have numbness in feet and legs. And bathroom issues ..I will see how all this goes after stopping that pill. October was 4 yrs for me.but last time I was on sirolimus I broke out with mouth soars.now I have to keep an eye on this too.i will mention the study to my liver Dr. Take care Rosemary

Jump to this post

Hi, @jackie421blfdgurl, and Congratulations on your October 4th anniversary of your liver transplant!
I hope that your body will respond favorably to the sirolimus medication this time. I don't have experience with Sirolimus, but I am aware that each of our antirejection medications carry a long list of potential side effects. I know that you will keep your doctor informed about any concern. I wonder if he/she has anything to ease the sores if they return?

Did you feel well enough to do anything special on the day of your anniversary?

REPLY
jackie421blfdgurl | @jackie421blfdgurl | 4 days ago

Hi Girl. Yes I am watching my mouth for any pop up soars that appear. There is nothing to cure except go off the meds. Thank u for my congrats..looking back it is remarkable to think of that time and remember everything....
I feel good,,, I think I went out to eat with my friend. Anything going on for thanksgiving? So many items to tend to on that day if u are hosting.I remember,,,In california most friends were transplants what we called them
so two yrs in row I hosted that day and cooked two turkeys . Shrimp cocktail..stuffed mushrooms..dessert
lasted to 12:00 midnight.I was younger and could pull that off....today,,,its,,whats on the menu...Have a great holiday.Always great to hear from Mayo

REPLY
View MoreView Less
Please sign in or register to post a reply.