Post transplant tacrolimus doses

[cherrygirl13]

Just curious - husband had liver transplant 2014 and came home on 8mg which was reduced to 5mg and has since been taking the same amount of Advagraf - so 5 years later he is still on 5mg 🤔🤔🤔 his last bloods said it was below target range (4-10 I think) 🤷‍♀️ - has anyone else experienced this ????

[freddie76]

Sorry cant help my hubby been on 5mg now since soon after tp.now nearly 8 years post tp.

Perhaps somebody else will have had this problem.

Good luck

[Kristian]

In terms of the reduction down to maintenance dose then what you write sounds about what you'd expect. The interesting bit is the being below the desired levels in the blood. I suspect if the consultant were worried they'd ring up to amend the dose. They may though be happy to leave it till his next appointment and make the decision then or shortly after depending on how his other results are then. Definitely something to raise next time you go though.

[cherrygirl13 in reply to Kristian]

Thanks 😊

[Beture47]

Hi I had a transplant 4 years ago

Started in 12 mg reduced slowly to 6 mg Adagraf . I also take 5mg of prednisolone My Tac level is 2.3 and I am doing well. Due at kings for blood tests on the 19th November. I feel well the liver team is not concerned. I am just told they can't reduce down anymore

I hope this helps

Elizabeth

[1football]

I believe it’s down to the fact that all our immune systems are different,I am 18 months post and on 4mg daily and have been since 6months

Good luck 😉

[Paulwil]

I am two years post and now on a maintenance dose of 4mg of Advagraf.

My team said 4 or 5mg are typical depending on your weight and other factors such as your kidneys.

[ThreeSmiles in reply to Paulwil]

Hi Paul

What did they say about kidneys being a factor please?

Miles

[alfredthegreat]

Hi cherrygirl. I started out on 12 mg I am now on 3mg and have been for 6 months. I am 15 months post transplant.

We are all very different and dosage is also based on weight. I lost weight before transplant through being ill for 5 years and I've been very steadily losing weight since (intentionally that is) and am now at a healthy weight for my height.

As Kristian says, if they were worried they would ring and amend the dose. Mine was dropped to from 6 mg to 3mg through a phone call. They do keep a close eye on the TAC levels.

Regards.

Alf.

[cherrygirl13]

I was just curious 🤔 as I have heard of people having it reduced and was wondering/reading about esomeprazole and tac levels and from what I have read it increases them not lowers them 🤷‍♀️ Hubby now has NASH F4 - so thought I would ‘revise’ my liver stuff - as so much has changed in 5 years 🥰 just came across a link between esomeprazole and tac - he’s been on it for years 🤷‍♀️ But they have just prescribed 25mcg fentanyl patches so I guess they aren’t too worried about liver (as much as we are - so to speak) - thanks all 🥰👍😊

[Adelou]

Hubby was taken off it a week after being discharged from transplant due to high potassium levels. He is on envasarus which is once a day slow release. As said above everyone is different

[Hidden]

Good evening cherrygirl13,

As mentioned by the other fourm members, dosing is very individual, and no one here can comment medically on the dose.

May I suggest you contact your husbands transplant team or hepatologist who could provide the answers to your query?

Best wishes

Trust9

[cherrygirl13 in reply to Hidden]

Thanks - I was only curious to see if anyone else had this happen to them - wasn’t looking for medical advice 👍

[Danisleigh]

My son is 21 months post transplant and last month they Increased his advagraf from 4mg to 5 mg as his levels had dropped to 2.1 and they were worried that was a little too low. He repeated bloods last week a month after the dose change to check again, I guess if his levels have shot up again they may decrease? They did seem surprised that 4mg wasn’t enough for him but I wonder if other things can affect like maybe being under the weather when bloods are taken?

[jojokarak]

Hiya cherry 🍒 girl x

The tablets are so individual according to tac level, bloods etc... Mine are up and down like a yoyo at the moment I am on the lowest amount I have been on since transplant due to the damage the tablets are doing to my kidneys...

I have just read your notes and I am in awe at your strength 💪 as a family 👪 x

I am with you in the frustration of the medical profession I seriously feel like a walking breathing test dummy sometimes I understand they want to make things better for future transplantees but just because we have complications doesn't mean we want to be treated that way... I hope in the future they are realistic about what they explain to people I can't remember once anyone ever telling me about the possible consequences of the transplant they talk about the surgery and the possibilities but not the effects it can have on our lives on a daily basis and also the mental health issues that come along...... They don't even tell you that you're liver can get damaged so quickly again as your husband I have fatty liver again I have even spoken to family that I don't think I would put myself or them through another transplant how can one body and mind take so much...

I hope that your husband isn't struggling too much and I really hope one of the doctors can help in any way possible x

Make sure you look after yourself