Prograf

[Grey]

Just been to kidney clinic and guess what, I take 1.5 mg prograf twice a day, so 3 mg a day, and they will confirm tomorrow that they will drop it to 1mg twice a day, total 2mg a day. He also agreed with me it is most probably because of my not eating regime when taking pills, better absorption. I asked him why the manufacturers did not stipulate not eating and he mumbled something like, well they don't mind patients taking large doses, they sell more. He said the problem with that is that prograf is toxic and has some bad side effects.

[Tibbs]

The manufacturers do stipulate not eating - it's right there on the information leaflet (see here: http://www.medicines.org.uk/emc/medicine/24928 under Method of Administration), and my hospital were very clear about taking it at the correct times and with the 1 hour / 2 hour gap before / after food. Maybe you need to ask your hospital why they're not following manufacturer advice / best practice protocol?

Bear in mind that a lot of people see their Tacro doses reduced post-transplant, whether eating near to dosing time or not. Sadly I was not one of those people, and am still on 10mg bd, and I'm very strict about my dosing. When I remember to take the tablets of course!

[Grey]

The aftercare clinic did suggest not eating but the prograf site I looked at said it is ok To eat with the pills. And I quote "How Should I Take PROGRAF?
Do not eat grapefruit or drink grapefruit juice while taking PROGRAF. Take PROGRAF exactly as your doctor tells you to take it. Take PROGRAF with or without food and the same way and time every day. If you take too much PROGRAF, call your doctor or go to the nearest hospital emergency room right away." The official site https://www.prograf.com/

[Tibbs]

I take adoport, so I guess that's the difference.

[Thumps]

I believe from conversations I've had at clinic that the key thing is consistency - if you always take it with or near food then your trough will standardise, same as if you always take it without. There's lots of factors, body mass, other health issues, why you've been transplanted, size of the transplanted organ. I'm down to (Adoport) 2mg am / 3mg night, from maybe 5 and 5 at the beginning? So not a massive difference.

[sporti]

Hi Grey-You are very lucky! Can I ask what your prograf numbers are please. I've been on 4mg twice a day and my number dropped to 7.8 but I felt absolutely great. Now back up to 5mg twice a day and feel like s---.

[rheaybou]

I believe from conversations I've had at clinic that the key thing is consistency - if you always take it with or near food then your trough will standardise, same as if you always take it without. There's lots of factors, body mass, other health issues, why you've been transplanted, size of the transplanted organ. I'm down to (Adoport) 2mg am / 3mg night, from maybe 5 and 5 at the beginning? So not a massive difference.

Also on Adoport / Tac. and how you absorb the drug will differ completley from one person to the next. Timing of the dose is key in ensuring a regular and stable blood level of the drug, everyone should have had this at the education session/meeting with surgeon and pharmacist.

Apart fom the early days I have remained on the same does witha very stable Tac level, so I am only absorbing what I need so tocixity is not a short term issue ......now if my Tac level was above 10, I would be worried

[Grey]

Sporti, yesterday the reading was 9.9 (bordering on 10 which is far too high) so the did a special test and will let me know today , probably to drop to 1mg twice a day which should get it down to 8 or so. We will see. I am now wondering if there is any one out there only taking 0.5 twice a day, would be very interested to hear. Hope things are going well.

[Grey]

Thumps, you said "There's lots of factors, body mass, " well am 6' 4" and weigh 93 kg's ( you might say am a large old man )

[rheaybou]

The speed of your metabolism will also be a factor Grey

[Grey]

Well an interim test showed level to be 8.8 so nothing will change now. Awaiting results of CMV test today.

[Grey]

CMV Test negative, really good news !

[sporti]

Excellent news Grey

[Tibbs]

Indeed, great news - congratulations!