Fluctuating Prograf levels?

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nycpetit
Posts: 262
Joined: Fri Apr 23, 2004 11:00 pm
Location: Miami Beach

Fluctuating Prograf levels?

Post by nycpetit »

Anyone else here have this issue? I am 3.5 months out right now from tx, and am on the steroid free protocal. I take Prograf, Cellcept (500 mg twice a day), Valcyte (for a couple more months), and Bactrim (until one year).

So I was taking Mycelex Troches as well for the first 2.5 months. And as they warned, when they take you off of that, the Prograf levels can drop demanding that you take more Prograf. I have (at least I think so) reactions to Prograf. Makes the bottom of my feet sore (like they've been slapped, sore legs, itching) that seemed to go away when the number of Prograf tablets I took per day were less. However, I take more Prograf now, have the symptoms again, but my blood levels are lower. This is confusing me.


So let's say for example, on 2mg of Prograf twice a day, I was at about a blood trough level of 9.7. Okay, dropped the Mycelex, and it went down to 4.4. Yikes, that was too low, and risky. So he upped me to 3mg twice a day. Slowly the side effects returned, and today he called and the level is still only 5.7. So now I have to take four and four per day.

Wondering if anyone else has these fluctuations. I asked to come back next week just for a Prograf level check, since I still feel today was a fluke. I had a mild case of the runs yesterday (usually due to Cellcept), and find it hard to believe with increasing the dose by a third that I only went up like a point and a half in my blood. And four and four seems outrageous to me. I've only ever taken 3 and 4 for a very short period of time.

Any thoughts on this would really help. I will start the four and four tonight and then next Tuesday go in for another check. Anything else that could cause the Prograf reading to be low??

Natalie
Nikki
Posts: 90
Joined: Sun Apr 25, 2004 4:14 pm
Location: Midlands, uk

Early days

Post by Nikki »

:D Hi there!
I take prograf but am unfamilier with alot of your other drugs, I've had my Tx for 7yrs now and my levels are stable but they did go up and down for years and the ammount I took was altered to settle it, its always checked when I have my bloods done and the dr's just keep changing the ammount you take until they're happy with the level in your blood, so don't worry about that, its very early days. Although I now feel pretty normal (well, as normal as a mad person can be!) if I look back it took alot of years for me to feel anywhere near normal, you get lots of little hic ups which take time to sort out, but lets face it, its all better than dialysis! I also experienced leg pains, sometimes they were so bad I couldn't walk, I had tests but no answers, its gone now but I guess that could've been a reaction to prograf, it does settle though and your body does get used to all the drugs and side effects.
Wishing you lots of luck, take care, xx :D
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