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I completely forgot to ask about creatinine & dehydration
I did ask about the importance of either the timing or food consumption with Tac, and my consultant told me that it was the timing that was more important, which needed to be more or less 12 hours apart.
Thats what mine says, so it might be different from what everyone else has been told- so I think thats what I'll go with. However, I don't know if he is going on the basis of food and tac being a one-off
At the moment I am not having my brekkie until 9am, so my 10am Tac dose is a bit out-- I am sure it will settle down once I get back to work and normal routine
Its so confusing, and hard to figure out whats for the best
Jen - glad you asked your doc - the renal pharmacists are also a great source of advice I have found ... I may have been a bit misleading when I said meals are most important - in that I don't eat if I have messed up the time of my meal vs dose of tac; but am happy with moving my timing around (in general by up to 30 mins) to accomodate this ... I was told that it is about keeing the level in your blood stable so I suspect that timing is obviously critical, but upsetting the absorption by food is also inadvisable.
All that being said though, you are being closely monitored and all is looking good so can't imagine that you can be doing anything wrong with your approach!!!
I found when I went back to work I needed to diarise my morning dose so I got a reminder, otherwise I would miss it because I got absorbed in other things. The days I have most problems are when my plans change as mentally I think about when the next dose is due each day, and if I haven't made plans and then do something ou of the norm I can mistime (or once even missed compeltely) a dose - not to be recommended!!!
I think that over time you become more confident that you are in control of your medication and can arrange your activities to accomodate (i.e. by having water & pills in your bag) - when I was in hospital immediately post tx it drove me mad that they didn't seem to be quite as concerned about how the meds were administered in the normal ward as I had been taught in HDU (i.e. only one morning drugs round for breakfast and mid morning meds etc, usually closer to tacro time than breakfast, even though some meds were supposed to be taken with breakfast) so it suggests that whilst they give us 'best practice' perhaps there is tolerance on that (even though I endeavour not to test it!)
The amount of prograf you take is variable because of one's weight, the desired level of prograf in the blood trough, and your metabolism. I believe it also has something to do with genetics/race/ethnicity. The hospital I went to at first, that refused to do my transplant, said they only used prograf for their african american patients, which I knew was not the case elsewhere but nevertheless, there is a racial difference when it comes to how the body metabolizes medications. We've all seen that with the use of different drugs for heart conditions for blacks versus whites. I have also read about some differing drugs for Asians.
I met a man in my unit in NY, a very tall, not heavy, but big black guy, who took 16mg and 16mg. Yes, 32 prograf a day! The bad thing for him was the cost! He had to get multiple prescriptions since they dole them out over here in 1mg tablets up to 5mg and 5mg (or ten a day) before it's just a much larger prescription and therefore more money. But that amount was keeping his blood trough levels of prograf, after 12 hours, at the correct level. Generally, and I've read it here as well, they want you somewhere between 4 and 6 when you are a year out and onward, unless you've had issues.
I take 3mg and 3mg. I am very small, 92 pounds, 40-41 kilos, but that amount puts me at about 4 prograf blood trough level. My body metabolizes everything very fast, so I am sure that is part of the reason.
What I'd love to hear more here about is the side effects people have, or think they have (it gets hard after awhile to know what is your mind and what is real with all the meds we've taken over the years, no?) with prograf, and/or mmf. (cellcept)
I could swear that one of them makes me exhausted. OF course I work 14 hour days, six days a week, but nevertheless I could sleep anywhere. My medication also seems to make me a bit wired within the hour I've taken it, therefore sleep eludes me a bit after the evening dose. I feel some anxiety (ha ha, more than usual) with them, esp in that first hour or so afterwards. And finally, the worst part, my legs kill me! Just pain, and I notice more spider veins than before. But it's similar to the feeling just after the transplant where you can't stand on your feet due to the body trying to get used to the medications, like something slapped the bottoms of your feet and ankles with a wooden paddle. I still hvee that feeling, but it's more my legs, and just aching, trobbing pain. (I was told post-transplant that it was from the prograf, and that some people retain that pain and burning in their feet forever)
Does anyone else have leg, vein, issues, pain? I would really love to know.
My tiredness is not due to anything like anemia. My last hemoglobin counts were (or is it hematocrit? I get the numbers confused) 14.5 which for a woman is really high!
And by the way, I am alive and well, and living in Miami Beach, and going to try not to be so elusive anymore!
Hello,
An update on my previous reply.
I was in hospital a couple of weeks ago because all my levels went a bit haywire. After having a biopsy, it was determined that my tacro levels were becoming toxic (I was on 11mg/ twice a day). Since then I have had weekly blood tests and my levels are still high, but I am now down to 7mg/ twice a day. My next blood test is on Thursday so we shall see what comes of that.
Just had to laugh about Prograf and who would mostly benefit from that drug!
I'm fair skinned and have blue eyes....and I take Prograf!
It has to do what the hospital's Transplant Department decides to use of immunosupressives...and of course weight, time of dosage , take on empty stomach. Level( in ug/ml) of Mycophenolic Acid should be between 1.0 - 3.5 Jane
just bumping this up as I have new questions about Tacrolimus, although these are partly answered by the post above.
1. I have just been told that my Tac levels are too high, and I'm now on the lowest dose ever since transplant...
The most I got to was 4/4.5mg -- now even 3/2.5mg is too high!
Is this normal to go down loads, and why does it happen?
2. Has anyone heard of the Cylex test? the normal Tac target levels are a gross overgeneralization as everyone is different, but the Cylex test can see if you are over-suppressed in relation to your own body (rather than set targets).
Does anyone know of anyone in the UK using this test yet, or is it just an American thing?
Hi Jen - glad you bumped this back up. After another bout of acute cellular rejection a couple weeks ago, the docs decided that Ciclosporin wasn't working for me, and switched me to Tacrolimus. Initially, a week ago on Wednesday my dose was 9mg (yes that's NINE!) 2x/day (alongside MMF, 500mg 2x/day and pred 5mg 1x/day). By Friday, they'd decided that was too high, and reduced to 8mg, then on Monday down again to 6mg.
I've been experiencing some 'toxic' effects of Tacrolimus - the shakes, and some seriously unsettled guts. Also, still quite a high creatinine level, which they're hoping will head back to normal as the Tac level reduces.
This whole thing has opened up another issue for me around timings of drugs and blood tests - already discussed a fair bit here. Will post again about that...
I was on 2mg twice a day on tacro, but after having a 3-month post TX protocol biopsy - It turns out that it was too toxic for me, although my blood levels where in the acceptable parameters.
I have now switched over to sirolimus, which is not a calcineurin inhibitor, which both Cyclosporin and tacro fall under. There are other side effects, but the hope it to not make my kidney toxic.
Alasdair- has your creatinine come down following the switch, or was the biopsy the only indicator of toxicity?
I was biopsied at 6 weeks following suspected rejection, but it turns out there were no problems at all - then I was on 4/4mg- and my Tac levels were off the chart.
I also asked about Sirolimus, but I was told there is no clinical indication that it helps kidneys last longer over CNIs.
