Ttck1825

[Corriemay15]

I had a liver transplant in 2016 now last few years health isn't going great, and Dr wants to change my adoport to envarus, but my story is long. But just for now does envarus stop bad headaches, cause weight gain. Plus suffer low sodium levels and type 3c diabetic. That's me for now

[Yellowsydney]

Hi, I think these are questions for your transplant consultant/coordinators give them a ring or email they will soon answer your questions, there must be a reason they are changing you. I had my transplant in 2017 and have always been on tacrolimus and mycophenolate, even though my kidneys have been damaged.

If you use Facebook please feel free to join our friendly and knowledgeable Facebook page called liver transplant support uk, thousands of people in your situation.

Hilary

[Corriemay15 in reply to Yellowsydney]

Hi how did you find out about your kidney damage, I also take the same meds has you, and do you suffer with your sodium levels and gaining weight, any help gratefully received.

[Yellowsydney in reply to Corriemay15]

My kidneys were badly damaged within weeks of my transplant, shows up in bloods, 5 months post I had to go back into Addenbrookes as my kidneys were so bad, lots of iv fluids and drug changes. I only take 0.5mg Tacrolimus twice daily to try to protect my kidneys, have to take Mycopenolate to keep Tacrolimus dose low.Sodium levels are fine, on the low side of normal but fine. I've lost weight since my transplant.

Hope you get answers

Hilary xx

[Corriemay15 in reply to Yellowsydney]

They said it would help my headaches, but still keeping me on the mycophenolate and sodium tablets. I was taken off water tablets because that could be the cause of kidney problems, but still can't get answers for the sudden weight gain and it's really frustrating and depressing.🥺

[Ubwa]

Envarus has the same active ingredient as Adaport, but it is in a slow-release form (the Adaport manufacturer's equivalent is Adagraft). So, it may not reduce any tacrolimus side effects.

[Corriemay15 in reply to Ubwa]

What if any side effects did you have from adoport and any changes at all with the Envarus

[Transplantboy]

For similar reasons to yourself my Dr changed me to advagraf and only took 1.05mg in morning as it's a slow relief compared to adaport and after 3weeks the headaches and pain in leg's disappeared I'm so glad and feeling so much better now than before. Hope you get the help from your doctor and feel the difference 🙏

[Petrina_gmfc]

Hi there I have not had a liver transplant have you been on the British Liver Trust on healthunlocked there will be very helpful or call the British liver nurse there will be more helpful let me know how you get on. They also have meetings on line if you want any information about it just look on the British Liver Trust website 😉

[Catfriend]

Hi, I had my liver transplant in 2018. I am not familiar with the medication you are taking (I'm in the U.S.); I've been on tacrolimus and mycophenolate since the surgery. My doses had to be adjusted periodically the during the last four years, until I'm finally at the correct level. My sodium level is borderline, but I do not need to take sodium tablets. My kidney is slightly damaged, but the values vary from one test to another (taking them every 3 months now), and last time they were actually normal. I was pre-diabetic until my tacrolimus was adjusted. My worst side effect is the trembling, especially in the hands. I hope that this little note will help you somehow, and wish you all the best for the future.

[Peter_Plymouth in reply to Catfriend]

Hi - I also had tremors from Tac but a small dose of beta blockers seems to have helped significantly with this issue - I only take 1.25mg in the morning and life is much more manageable. I hope this helps - Peter

[buckldgl]

I had my transplant in 2017. I've been on steadily reducing doses of Advagraf Tacrolimus since. Down now from 8.0mg a day to 0.5mg for the last couple of years.But last year my kidney function started to rapidly deteriorate.

I changed to to mycophenolate but the side effects were unbearable. Severe stomach problems and massive fast weight gain. I reverted back to Advagraf but I am now about to start kidney dialysis as kidney function is now 16% and dropping.

I'm back down to a healthy weight but side effects are extreme fatigue and insomnia.

Moral of the story;

There is rarely a win win solution

Good luck