Am I on the most ridiculously high dose of tacro/prograf?

[carla13]

Hi all,

I am 7 months out of transplant (my second) and am on 16mg of prograf per day (down from 20!) everyone else on here seems to be on about 5mg a day or less! I'm not trying to make a competition out of it, but is anyone else on a similar dose? And are they suffering any side effects? My insomnia is unbearable, I'm averaging at about 3 hours a night sleep, and I'm a bit shaky and nervy. I'm also on myfortic and pred but the clinic are trying to get me off pred seeing as how I've swollen up like a balloon!

On the flip side kidney function is fab and am correcting my low hb with epo, (Due to low HB I was too tired to do chrimble this year...:O( so I don't want to appear as if i'm complaining - every night where I don't have to plug myself into that d*mn mchine is pure unadulterated bliss...I'm just wondering, is my prograf dose silly?

[okarol]

Jenna gets her lab results monthly and they check her "trough levels" to be sure she is not over or under what the optimal levels are for Prograf and Cellcept. What do your labs say?

[jbeany]

I'm on 3.5 total per day, so yes, that does sound like more than average.  But I thought it was all about how much stays in your system, not about how much you are taking.  (Hence the trough level.)  Maybe you just don't absorb it well for some reason?  Have you talked to your doc about the difference between taking it with or without food?

I can tell you I was still shaky at 7 months - especially my hands.  That did fade - I can barely notice it now, at a year and a half.  As for insomnia - well, yeah.  But after a decade of needing 14 hours of sleep a day, I guess I just ignore the times I can't sleep. 

[cariad]

Carla, I agree with the others - that does sound high, but it is down to how your labs are. If your creatinine stays low and you're on target with your trough levels, then it may just be what you need. The highest I was on was 4 mg a day and for a while I seemed to just process the drug like mad. Then suddenly my Prograf level skyrocketed for no reason that could be pinpointed and they started lowering the dose.

I had horrible side effects from Prograf - severe aches, not like a flu but just pain more like arthritis. There were days, many, where I could barely walk. Hopefully your dose will eventually come down, but you should eventually adjust and the shakes should subside. Good luck!

[Ang]

i am on 1.5 mg morning and night
levels yesterday  @ clinic was 5
tx month  5
don't know what/if there are differences as i am in australia

[Sugarlump]

Hi I am post-transplant 5weeks and i am on 14mg of Advagraf daily. I too have terrible shakes and am feeling really weak. I have a bit of a cough at the moment too that isn't helping either. I am taking sleeping tablets to help me sleep. My docs say things will settle down but I am struggling to cope at home with feeling so poorly yet my creatinine levels are really good (139). I am also on 15mg of pred too, my phospate levels very low so having to eat phospate high diet and take vitamin D supplement. I find it difficult to concentrate on anything. Is it the drugs and how long before these symptoms ease?

[carla13]

Thanks for all your replies! Okarol, my labs seem to be right on track, so I think I must absorb it really quickly. Creatinine is about 95-105, so no probs there. I'm not at clinic for another month (yay! It's the longest i've ever had to be NOT at clinic!) But when I am I'll have another chat about it.
Jbeany, I'd forgotten about absorption rates! Thanks!

Until then, my GP won't prescribe me any sleeping tabs, so I'll just have to think up inventive ways to pass the night!

Thanks again all!
x
PS Cariad, your posts are always particularly inspiring to me, you replied some time ago to an angry post of mine about Doc's making assumptions about me not taking meds and I've always meant to thank you for it! I followed your comments a few months ago about your probs on Prograf, and felt for you deeply. I hope things have settled a little now. x

[RichardMEL]

Carla - 95-105 is a fantastic creat level!! That's totally in the normal range (to the higher end of normal, but totally normal) you must be STOKED! I'm at 128 just 6 weeks after transplant and feel fantastic even though I have a way to go. It's so awesome and amazing (I marvel every day at this little miracle inside me...) to have this happen.

I'm not on prograf/trac so have no clue, but I'm interested in those that are on the evil that is cyclosporin and what sort of doses you're taking? I started at 225mg twice a day, now down to 150mg/twice a day. Does anyone know what the usual maintenance amount is?

I can't wait till they lower the prednisolone (currently 20mg a day). I'm finding it hard with the hunger and piling on the kilos because I am working hard to keep my protein intake up, but then I feel like I am eating too much (plus I am much better at eating 3 meals a day, which I wasn't doing while I was on D). I am sure the dietician is going to have a field day with me sometime soon!

[-Lady Noir-]

Hi all,

I am 7 months out of transplant (my second) and am on 16mg of prograf per day (down from 20!) everyone else on here seems to be on about 5mg a day or less! I'm not trying to make a competition out of it, but is anyone else on a similar dose? And are they suffering any side effects? My insomnia is unbearable, I'm averaging at about 3 hours a night sleep, and I'm a bit shaky and nervy. I'm also on myfortic and pred but the clinic are trying to get me off pred seeing as how I've swollen up like a balloon!

On the flip side kidney function is fab and am correcting my low hb with epo, (Due to low HB I was too tired to do chrimble this year...:O( so I don't want to appear as if i'm complaining - every night where I don't have to plug myself into that d*mn mchine is pure unadulterated bliss...I'm just wondering, is my prograf dose silly?

Mikes on 14mg now [As of last night..] He was on 16mg, and before that 20 and even before that 24mg!
He has very similar side affects, but he's only early days

[carla13]

Hey Richard!
Yeah, I'm really pleased with my creatinine levels! It's like being a normal person!
I was on cyclosporin for the entirety of my first transplant, not sure if this is your first tx or not, but my maintenance dose was 400mg (200 twice a day) which was high, but my first tx was not a very good match. I got on very well with cyclosporin, loved my lovely thick hair, didn't enjoy my fuzzy face hair, never had any problems with my skin (though I live in North West england, so sunshine isn't really a problem! lol) and it kept my kidney (Sidney) going for 15 years!
I HATE HATE HATE prednisolone! I can't stop eating! My stomach and face have swollen up to moon proportions! I've put on 6 kilos and a man with a tuba now follows me round playing 'fat' music  Hope they bring your dose down soon!
Lady Noir - Hope Mike continues to do well. My dose to prepare me for transplant was 30mg, but that was only for the 2 days before the tx. I'm glad his dose is coming down, and I'm glad to hear someone else is on a similar dose, was beginning to think I was aloooone! 
x

[-Lady Noir-]

OH crikey i forgot about before the transplant.. lol!

Thank you, i hope you continue to do well too luv! 

[RichardMEL]

This is my first tx so it's all new to me