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 10 6:11pm

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

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 9 1:51pm
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

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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?

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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.

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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

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1 reply
mwai | @mwai | Nov 6 6:17am
In reply to @rosemarya "Hi, @mwai. I want to welcome you to Connect. I see that you received your liver..." + (show)
@rosemarya

Hi, @mwai. I want to welcome you to Connect. I see that you received your liver transplant 6 years ago. My transplant was 15 years ago. I am glad that you have joined the conversation. I have, over the years, been reminded that our medications and dosages are adjusted according to our individual needs. I still have routine labs drawn every 3 months so that my transplant team can monitor me from a distance. And some have needed adjustment over the years.
Are your medications causing any unwanted side effects that has you wondering about your dosage? Are you being monitored by local doctor or transplant team?

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Hello Rose, thank you for reaching out to me, indeed my transplant team monitors my dosage every 2 months. My side effects are very minimal thus far.

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Mentor
Rosemary, Volunteer Mentor | @rosemarya | Nov 5 12:17pm
In reply to @mwai "That’s the first I have heard. 1mg every 12 hours is definitely a blessing. It’s Been..." + (show)
@mwai

That’s the first I have heard. 1mg every 12 hours is definitely a blessing. It’s Been 6 years post liver transplant for me and taking 6mg a day. I guess I have long ways to go.

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Hi, @mwai. I want to welcome you to Connect. I see that you received your liver transplant 6 years ago. My transplant was 15 years ago. I am glad that you have joined the conversation. I have, over the years, been reminded that our medications and dosages are adjusted according to our individual needs. I still have routine labs drawn every 3 months so that my transplant team can monitor me from a distance. And some have needed adjustment over the years.
Are your medications causing any unwanted side effects that has you wondering about your dosage? Are you being monitored by local doctor or transplant team?

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1 reply
mwai | @mwai | Nov 5 6:35am
In reply to @jolinda "@gaylea1 Wow! 1 mg of Tacrolimus every 12 hours, that is the lowest dose I have..." + (show)
@jolinda

@gaylea1
Wow! 1 mg of Tacrolimus every 12 hours, that is the lowest dose I have heard of! Is that because you were such a good match to your donor?

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That’s the first I have heard. 1mg every 12 hours is definitely a blessing. It’s Been 6 years post liver transplant for me and taking 6mg a day. I guess I have long ways to go.

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1 reply
azdan99 | @azdan99 | Oct 26 5:20am
In reply to @wonton "I take the same- 1 mg every 12 hours." + (show)
@wonton

I take the same- 1 mg every 12 hours.

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I have been teduced to 0.5 mg, twice a day, after 10 years. I am now 21 years out from heart transplant. I also take mycophenolate 1000mg twice a day. Never had issue with meds or rejection. Truly blessed!

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wonton | @wonton | Oct 25 6:42am
In reply to @jolinda "@gaylea1 Wow! 1 mg of Tacrolimus every 12 hours, that is the lowest dose I have..." + (show)
@jolinda

@gaylea1
Wow! 1 mg of Tacrolimus every 12 hours, that is the lowest dose I have heard of! Is that because you were such a good match to your donor?

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I take the same- 1 mg every 12 hours.

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1 reply
jmp1234 | @jmp1234 | Sep 22 11:03am

I advise listening to your medical team..

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chickytina | @chickytina | Sep 15 8:50am
In reply to @abider "Hi Rosemary: I learned about test called FREE CELL DNA from my hepatologist. I further inquired..." + (show)
@abider

Hi Rosemary:
I learned about test called FREE CELL DNA from my hepatologist. I further inquired and requested to have the test. Since it has only been perfected for Kidney TXP's I was unsure what the possibilities could be for Liver TXP.
I requested the test called ALLOSURE in January and a draw was taken for it. A few days later I received a call from ALLOSURE in CA telling me they would undertake a trial for me if I was willing. I will begin in a few days at .5mg TAC BID and if all goes well in three months I will be taken down to ,05mg a day with the possibility of NO medication by late 2025 if all goes well.

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Please keep the community informed of how the trial goes if you are allowed. This sounds amazing. I wonder the possibilities if it is successful.

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