Hi guys, Can anyone tell me if 14mg of tacrolimus everyday after 3 months post transplant is normal? I know from other consultants that I have slight rejection. I have 1 consultant who will not give me an answer to "what are my blood results". He says everything is fine and there is nothing to worry about. I actual fact I'm not worried I just want to know, even saying directly to his face "I want to know" he replied "Don't you believe me, stop worrying". This was Tuesday and I got the usual phone call the next day, everything is fine and stop your steroids and keep taking 14mg of tacrolimus. So I asked if I was still getting slight rejection, he replied "stop worrying, everything is fine". I know everything is fine I just want to know. (I'm the type of person who wants to know, if I'm dying tell me and I will deal with it.) So I am wondering why my medication isn't being reduced if there is no rejection? Can anyone tell me if you can be on 14mg with no rejection?
Thanks....
Danny x
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Zukosmile07
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The Liver team will want to reduce the dosage but will always do it when 100% certain... so even if they think it could be reduced today, they might wait another week or two to make certain they are not reducing it too soon based on one or two excellent results. I think of it as ... a little bit more protection is better than a little bit not enough A little like finishing a course of antivirals even though the virus has gone... like me and my Harvoni, still taking it while Hep C free
Everyone is an individual when it comes to tac and how quickly the dose is reduced or indeed what the maintenance level ends up being. Its still early stages yet and as you've been through rejection it's not surprising your dose is still quite high. Its also depends on how well you are tolerating it too and also whether there is any other immune suppressing meds being used in parallel, such as mycophenolate. So, unfortunately there's not really a straight forward answer for you.
It will eventually reduce but they'll not rush it if they think its better not too. In your case as you've already had a bout of rejection I'm sure they'll be more cautious too.
Thank you Kristian, that does make perfect sense. I was a little annoyed with the consultant for not giving me my blood results. I had a pen and my file ready.....he wasn't having any of it. Even when I was looking at the monitor he switched to another page. Wierd!
Different people react differently to their medication and they need to find the right dose for you. It all depends on the Tac levels in your blood results. The Consultant will send a letter to your GP after every appointment and these include the full blood results. So check that you are definitely being sent out your copy and you can also ask your GP for full copies of all your results.
You can now request a couple of forms from your GP and you are given a password to access all your notes at your GP, the Consultant usually forwards all results and plan of care, so hopefully it will put your mind at rest, Take care XXX🧚♀️🧚♀️
As others have said the dose of tac is an individual thing and even two years post Transplant sometimes it changes to balance something else out ie stopping steroids.
I don’t agree however that you should be fobbed off. You are the patient and it is your right to know! How can you educate yourself about all the different things happening without them sharing the knowledge. The consultants and the nurses in my area share the information and put it into graph forms to enable patients to learn and understand. So I definitely think I would pushing for this.
You are doing so well, and it is your right as a patient to know about your body!
I feel great and that is the reason why I just wanted to know and not because I'm worried. I'm going to ring the hospital in the week and ask for my results via email....🤔🙂
Interesting! Another consultant who won’t divulge blood results. We are still chasing my husband’s results. And no, he hadn’t sent them to our GP either!
Hi lantana, at my local hospital it took the consultant a while to tell me I had end of life liver disease......"liver cuput" was his exact words!. This is different I'm on the mend and I'm curious....... that is all....🤷♂️
I started on 10mg after surgery...theyb then moved me up gradually to 14mg. Like you I was a bit worried by this but they assured me everything was ok.....it was only after about 2.5/3 months this started to come down again. Now they have moved me to 9mg a day after 4 months. I wouldn't worry....I am sure if it was serious you would be called into hospital
Hi Si, I know you are completely right and I'm (timewise) 3 months exactly today, so hopefully on my next check up I will be reducing the tac. Thanks for the support buddy.... 👍
Hi Danny, highest dose I've taken was 7mg straight after transplant but I've never had any rejection and I also take mycophenolate. As for blood results my local hospital won't tell me even when I've been an inpatient, Addenbrookes has an online/app system called mychart and blood results are released to patients the same time the doctors get them, I keep spreadsheet of my results.Generally if your consultant isn't worried there can't me much wrong, let them do the worrying.
Thanks mum, I'll check out the app because I thought they could just email them to me on request. That is really helpful 😃. How are you doing mum....I Don't ask enough, just like every son 🤣🤣🤣....x
There are no normal levels as we are all different. My friend had her transplant five years before me and she's still on 5mg of tac twice a day whereas I was down to 0.5mg twice a day within six months. My friend still has to take steroids whereas I don't. It depends on your blood levels as others have said. Try not to read into how much you are taking.
I just wanted to add that depending on what hospital you are with there may be an easy way to see your blood results. I'm under Addenbrookes and I have their app on my phone. I have my bloods done at my surgery then send them off to Addenbrookes. The following day the results come through on my phone. The app is called MyChart.
Hi janty, I'm with Leeds hospital who are fantastic. I understand that the consultants are different as well. He has probably seen thousands of post transplant patients and it's his way of reassuring people. I just thought if I am doing so well it would be nice to see my results.......no problem I'll ask in the week.Thanks for the support buddy....
The way it was explained to me was that 'its not a precise science, can't fit it into an equation where your height is X your weight is Y, new liver is Z, so X+Y+Z=Ymg of tacrolimus, every transplant is unique and these guys know what they're doing so don't worry and enjoy your new chance at life.
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