Traclamus levels are high

[Shaunwood]

I'm taking traclamus 3mg in the morning and 2mg at night consultant phoned 2day and says the level has gone up to 6 got to have another blood test in next 6wks he didn't mention he was worried about it but i am had my transplant in 2018 anyone on here to help also if he lowers the traclamus will it stop my liver from working

[Richard-Allen]

Hello Shaunwood, we are all different so it's very much a case of "Horse for Courses" I'm afraid. I'm presently on 1mg of Tacrolimus twice a day, after being 7 years post-transplanted at the QE back in 2016 I've known people to go down to half a milligram.

It's good that they are monitoring your tac levels. My levels appear to fluctuate as well normall between 6-5. As long as the hepatologist is happy, there's nothing to worry about.

[Shaunwood in reply to Richard-Allen]

Hi Richard thanks for your reply my level has fluctuated between 5 and 6.2 for a while but my serum creatinine are high 114 at one time they were 130 November 112 this means from what I've read that my kidneys may not be working to well am i correct?do you no anything about this

[Richard-Allen in reply to Shaunwood]

Sadly Shaun the kidneys do take a battering from the Tacrolimus so reducing the doseage is always better. I wish I could reduce my Tac levels further, but 5 is the limit for it to go.

Tacrolimus alters the way the hepatocytes in the liver process sugars. This is why many people who were diabetic before the transplant, will remain diabetic afterwards. Having said that, I have known some people to reverse their diabetes all together. But, once again we're all different.

[Kristian]

Hi Shaun,

A level of 6 is reasonable in my experience. However, if they are seeing a bit of an increased impact on other things, particularly kidney function, then they may want to just check if that's just a blip or whether they may want to look at amending your dosing to give your kidneys a bit of a better time. If your liver tests are remaining pretty stable they may even consider lowering your dose. Thats what they did for me last year and all has been fine.

The change in kidney function reading could've been caused by a one off event, so it may not even be medication related. So it's a sensible precaution to get that extra set of results. They can then consider if any changes are necessary or not.

I wouldn't at least stage jump to any real conclusions about what this means. It could be nothing or it could just mean that some amendments in treatment may be needed. Reducing the tac dose, as in my case, isn't likely to stop your liver working. It's very much something they like to do anyway.

[Flowergirl24]

Hi Shaunwood.

My tac levels at my last appointment at the QE early January was 10. My consultant has reduced my dosage from 4 mg x 3 mg to 3 x 3 now. All other things were fine and my kidney levels went down slightly from 81 to the score of 79. I will be 4 years post transplant this year. Everyone is on different dosages. I’ve also had my mycrophenalte reduced to 250 mg a day now.

[bagpuss7]

Hi Shaun, don't panic. I had this happen more than once. I am 18 months post transplant. Your body adjusts to meds and needs less. This is good news! Tacrolimus is quite toxic so the less the better. They will never let your" liver stop working" what they mean is a lowered dose could send your enzymes up so they have to mention it. Should that happen, they will reintroduce steroids to calm things. Having said that, I've had two reductions and my results are apparently " really good" Trust them.

[BritishLiverTrust3 Administrator British Liver Trust]

Dear Shaunwood,

If you [are in the UK and] would find it useful to talk things over, our nurse-led helpline is open Monday to Friday from 9am to 3pm on 0800 652 7330 (excluding bank holidays)

Best wishes

British Liver Trust

[Treeclimber62]

I can only reiterate what's been said don't worry mine shot up a couple of years ago to high levels they reduced my tac to 2 x1 mill a day all good now it's not happened since just a blip if uour with the qe they will soon have it under control

[Shaunwood]

Thank you all for replying that's made me feel better noing that but I'm concerned about my serum creatinine as that is a high level 114 if you can understand will taking less traclamus bring it down? I've looked back at levels the highest level was 130 that was march last yr Nov was 112 thanks again hope you're well

[moggomereno]

hi Shaun.

My tax levels have just very recently been adjusted to 7 ml per day from 6 ml. Advagraf.

I know it isn’t a big change but I’ve started getting very short of breath and dizziness on the most very slight exertion.

Had transplant in June 2023. I’m now 54.

All the best.