Tacrolimus and Rejection

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MatthewC
Posts: 75
Joined: Sat May 05, 2012 3:37 pm
Location: Oxfordshire

Tacrolimus and Rejection

Post by MatthewC »

My brother is having a tough time; he got a throat infection before Christmas and antibiotics didn't fix it. Eventually they said it was glandular fever, so they had him in to reduce his Tac and try more antibiotics. The infection has now gone but his creatinine is all over the place and they keep changing his Tac dose. He (and I) are confused!

It seems that when they reduce his Tac, his creatinine falls which I think is what you would expect - it must demonstrate that the kidney is working as it should. They have to keep the Tac in his bloodstream at a certain level to prevent rejection, but how do they measure rejection? Hence, how do they find the balance between Tacrolimus and rejection and letting the kidney do its job?
MidgeMan90
Posts: 132
Joined: Fri Jun 22, 2012 8:49 pm
Location: Staffordshire Moorlands
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Re: Tacrolimus and Rejection

Post by MidgeMan90 »

Hi,

I have been having similar issues which seem to have subsided now. I have the EBV virus and I have had it since November 2011, if not monitored and it takes hold it develops into glandular fever.

It is such a tricky job to try and balance the dosage of tacrolimus. Too much tacrolimus and it starts to damage the kidney, too little and the body will start fighting the kidney and it will reject. The key word is balance and it is all about finding it. This is what I think the docs are doing with your brother hence all the different doses they are trying. It isn't an exact science. I myself didn't settle on a steady level of tacro until well after a year of transplant and even now it is subject to change.

Rejection is calculated using all sorts of factors and can usually be confirmed via a biopsy - I've had two myself. But the docs will only recommend a biopsy if they are concerned and to be on the safe side.

It should be noted that not everybody's creatinine settles at the same level and it can bounce around based on certain things, drugs, fluid intake, amount of sleep or if you had a nice big juicy steak the night before. My level currently sits around 130-150.

I just think the docs are trying their best for your brother and trying to find that perfect balance which is best for your brother's kidney.

Regards, Dan.
Diagnosed with end stage renal failure out of the blue - 11/02/2010
Haemo - February 2010 - April 2010
APD - May 2010 - June 23/2011
Transplanted via live donor - 24/06/2011.

Doing my best to look after that kidney.
MandyV
Posts: 1717
Joined: Mon Apr 10, 2006 10:17 am
Location: Fulham

Re: Tacrolimus and Rejection

Post by MandyV »

Hi Matthew - just to add my experience. I think that they look at the creatinine as one of the primary markers for rejection but as far as I understand, the definitive diagnosis is biopsy. Yes you would expect a decrease in dose of tacro to decrease creatinine. They should set a target fk level (fk being the original name for tacro) and this is generally around 5 - 8 as a trough - in other words just before the next dose of tacro. If there is real variation in the levels and creatinine they look at the exact dose time but otherwise they are happy enough that they test roughly at the time they expect a trough.

At my hospital if you are having issues with this you are often asked to do a tacro curve where they plot how you metabolise tacro via blood test over a number (up to 8) hours. This enables them to see if there is anything funky going on. In my case I flat line (more or less) my tacro metabolisation so they have lowered my target (and therefore dose) to max 5 as the biopsy showed damage from tacro toxicity which is a known side effect.

The important thing is to ensure that he is also being very consistent with his medication with both time and food. I was told not to eat for 2 hours before my tacro or 1 hour after as food affects absorption. Not all hospitals tell people this (though it is on the inserts) so whatever he does he should be consistent and that will help them get him to more stable levels.

When this sort of thing happens you realise why people tell you that the post tx journey is a roller coaster - transplant is only the beginning!

Hope things settle down and that you have recovered well from your donation!
MatthewC
Posts: 75
Joined: Sat May 05, 2012 3:37 pm
Location: Oxfordshire

Re: Tacrolimus and Rejection

Post by MatthewC »

Thanks Mandy and MidgeMan. That's very helpful.

Currently it is not good as my brother's hospital (not St George's where the op took place) have been really messing him around with some absolutely useless medical decisions and cr@p nursing care. For some days last week they had him at Tac of 15-17 (target 8-12!!!), creatinine of 170-200 and CRP of 40-46 (What? Normal is below 3 and 10 is very high). On the Sunday his canula wouldn't work when they came to do his 12 noon antibiotic, and they didn't fit another until 8pm; then he didn't get the dose until 10pm so basically missed two doses of an every six hour prescription. So much for the consultant's care plan! Thank goodness he is back home now; I doubt that he will agree to be re-admitted in the near future without some clarification of what they are trying to do.

Why do they not listen to the patient? :twisted: :twisted: The absolutely worst of the NHS shows itself, after the superlative care we both had at St George's.
AmandaClare
Posts: 658
Joined: Tue Sep 18, 2007 1:58 pm
Location: London

Re: Tacrolimus and Rejection

Post by AmandaClare »

Sorry to hear that, MatthewC. I'm glad your brother is home. How is he in himself?

I'm afraid this feeds into one of my greatest prejudices, against local hospitals. Based on personal experience, other people's experience and a report I once edited containing harrowing details, I think care in big teaching trusts is usually far superior. Not that there aren't exceptions in both directions, of course.
Alports Syndrome
Dialysis 1986, aged 14
Transplant 1988, still going strong!
Baby boy 2010
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