Atypical Liver Rejection and Headaches

Posted by AJ4916 @aj4916, Mar 30, 2023

My husband is post liver transplant Dec 30, 2022 (non-Mayo Clinic). He’s had one episode of an atypical rejection (liver enzymes did not elevate but he deteriorated and a biopsy confirmed. Also had abnormal blood flow away from the liver). Since then he has been placed on higher dose pred and now has daily headaches.
1. Has anyone else had an atypical liver rejection with normal LFTs and if so, how are they monitoring you for future rejection?
2. Has steroids (or Tac) caused headaches for you and how did you achieve symptom management?
Thanks.

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Hi aj4916 I am sorry to hear about your husband's liver rejection. I know what it is like when you suddenly don't know what to expect. I have had the opposite . My liver enzymes spiked high 3 times since this past December, 8 months after my transplant. Biopsies and this past Monday an ultrasound all reads normal. Mayo ismanaging via weekly blood draws and if needed adjusting my tac.
The last spike a week ago when my tac level was 4.8 they tripled my morning tac and doubled my evening tac. Six days later my enzymes were much improved but tac jumped up almost 9 points to 13.2. The nurse asked if I was suffering headaches. I wasn't but was dealing with increased tremors, foot and leg cramps and weakness. So doctor dropped tac down from 7 pills a day to 2 pills.
Yes tac has several side effects including headaches. Just keep in touch with your doctor or if you are a Mayo transplant be in touch with "transplant coordinator

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Hi,ajdo I had an acute liver rejection after almost 2.5 yrs. of my LTP. They have no clue why, increased my meds put me on strong prednisone dose. I am now4 months out liver enzymes are normal and off prednisone. I take 3/3 tacro 4/4 cellcept which I pray they decrease feel so tired. My tac level is 6.8 from 10.6. Blood checked once a month. I declined the liver biopsy was to scared it would open up more problems.
I hope 4916 starts feeling better and gets answers soon.
😊💚

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@myfablife

Hi,ajdo I had an acute liver rejection after almost 2.5 yrs. of my LTP. They have no clue why, increased my meds put me on strong prednisone dose. I am now4 months out liver enzymes are normal and off prednisone. I take 3/3 tacro 4/4 cellcept which I pray they decrease feel so tired. My tac level is 6.8 from 10.6. Blood checked once a month. I declined the liver biopsy was to scared it would open up more problems.
I hope 4916 starts feeling better and gets answers soon.
😊💚

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Hi
I am glad your numbers are looking good.
Your transplant medics seem to be working well as long as you stick to the 12 interval plan on a daily basis. Also, required is a good workout everyday perhaps on a treadmill to keep your body loose.
I am not sure why you declined the biopsy! In my case at a certain point my numbers were up and down and they requested to a biopsy or just let it go and a wait and see approach. I went for the biospy option and glad I did. They were able to specifically point the problem on the liver and medicate accordingly and the rest of stuff such as workouts, food intake etc. I stuck to the plan and results from the blood work within standards. This does not mean it will be great for another week or so, but all depends on the patient who he/she approaches the situation. I sincerely wish you well.

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Hi, yes I chose the wait and see plan and the TP team did not reject this, If they pushed it I would have absolutely when ahead with it. I am so HAPPY that my numbers are back to normal cannot say the same for kidney numbers but I hope if they decrease some of my meds that to will get better.
I am a walker try hard to keep on a decent diet drinking my water. It sounds like you r doing well😊💚

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@myfablife

Hi, yes I chose the wait and see plan and the TP team did not reject this, If they pushed it I would have absolutely when ahead with it. I am so HAPPY that my numbers are back to normal cannot say the same for kidney numbers but I hope if they decrease some of my meds that to will get better.
I am a walker try hard to keep on a decent diet drinking my water. It sounds like you r doing well😊💚

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All the best and stay healthy!
Health is wealth.

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Jamesduaiswany Amen to that.. my pop use to say if you don’t have your health u have nothing. After my liver disease I now know how important health is b/f this I was a very healthy. This has definitely been eye opening to me. So again Health is Wealth I will remember this one.😊💚😊

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@myfablife

Jamesduaiswany Amen to that.. my pop use to say if you don’t have your health u have nothing. After my liver disease I now know how important health is b/f this I was a very healthy. This has definitely been eye opening to me. So again Health is Wealth I will remember this one.😊💚😊

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Hi
Once I thought I was invincible and carefree.
I was extremely careful in everything I did, just conveniently forgot about the liver health.
This just opened my eyes and the whole wide world that I am not the only one. I sincerely hope everyone will find a liver just to stay alive for another day. This is the time one knows how precious time and life is. God brought us to this world for a certain purpose. Living until one knows the purpose is a blessing. Do well, and be good, don’t waste it. There is no guarantee that I may wake up tomorrow but today is the tomorrow we have been waiting for yesterday. Stay fit, workout every day and be healthy.

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@aj4916, I wanted to check in. How is your husband doing? How are you doing?

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