A Prayer for Prograf

Prograf is my lifeline.

The generic name is tacrolimus, not to be confused with sirolimus (Rapamune). Prograf is one of my two immune-suppression drugs, with the other being prednisone (yay, boo – see my post on “The Devil you know”).

Prograf keeps my kidney alive, thereby keeping my transplanted kidney alive. That one little pill is so terribly important.

You can look up Prograf on WebMD or whatever. I’m not here to give you the medical specifics of exactly how it stops my immune system from attacking and destroying my kidney. I barely remember myself, despite the hardcore drilling I got when I was learning how to take my meds in the hospital. I believe I remember, though, that it is classified as nephrotoxic. So basically, it is slowly poisoning my kidney even as it is saving it.

The key is the chemistry. It has to be in perfect balance. Your creatinine and tacrolimus levels have to be just right in order to keep everything in working order and to prolong the life of the graft (side note – graft? I mean, I get it why they use the word, because it’s literally grafted in there like a skin graft…but why not transplant? Graft makes me think that somehow, my kidney is blackmailing someone, somewhere…and if it is, how come I’m not seeing any of the money?).

One of the things you get used to in the early part of your transplant, even down the road, is getting your Prograf level read. This involves at least 12 hours between your last Prograf dose and your morning bloodwork. You cannot take your Prograf before your bloodwork, which is fine. I just have to remember to pick it out of my pre-sorted daily med container for that morning. I don’t remember exactly how they read your Prograf levels – seems like there are lots of things I don’t remember but I know that I have to do – but the transplant folks are extremely specific in what they want to see in both your creatinine (kidney function) and Prograf levels.

For a while, I was on an extremely unusual combination of both Prograf and Rapamune – tacrolimus and sirolimus. They’re pretty similar, but like similarly-charged magnets, they are not supposed to get along. Still, it seemed to work for me. For almost eight months, I was on Prograf and Rapa (this was after the “Break my Bones” incident where Imuran had been ruled out for me, and CellCept had already bitten the dust). Then, I developed a deadly allergy to Rapamune, and all that was left for me was a combination of Prograf and prednisone.

So now, this little pill is very, very important to me. Did I mention that it’s also wicked expensive? One bottle for a month would run me over $1,000 without insurance. Even wholesale, my small neighborhood pharmacy in Boston lost money when they ordered my Prograf for me. The pharmacist (who owned this mom-and-pop business) personally begged me to take this prescription to a major chain, as the recession was hitting, and he lost close to $200 for every refill for me. For his honesty, as well as the way he personally watched over my other medications and helped me out, I was glad to give my Prograf business to Walgreens. But, Prograf is not a common drug. I would have to make sure I called two days ahead of my refill time to give them enough time to order it – and this was a Walgreens in Back Bay in Boston. You would think they’d keep it stocked, but apparently, it was expensive enough that they didn’t. Go figure, you spend all that money on Prograf, and you don’t even get high. What a gyp.

There is a generic now. It’s tacrolimus, and three companies manufacture it. However, my doctors at both MGH and UPenn are adamant that for the time being, I stay on the brand name. Apparently, generic medications are manufactured to be within a “range” of the original medication. This might be all right for your anti-biotics or your painkillers. But, for an immune-suppression drug where exactness is critical, it is an unacceptable risk. Who knew?

Prograf itself is not all roses and bunny-flowers. At least for me, the major side-effects are insomnia and tremors. When they were fixing my Prograf levels in the first few months after the transplant, I felt like someone had stuck my finger in an electrical socket. I was shaky, jittery and wired. When I tried to lie down to go to sleep, my legs, feet and hands twitched constantly, and my whole body shook from the inside out. Eric would have to feed me sometimes because my hands shook so badly, I couldn’t hold a fork or spoon in my fingers. Coffee cups would slip from my hands, veggie-burgers would go flying across the table.

Finally, after about a year, we settled on 2 mg in the morning and 1 mg at night. That has been my regimen – no matter what else has changed – for the past two years. And, no matter what has happened – surgeries, hospitalizations, travel, etc. – I have never missed a dose. I’m just good like that because I know this isn’t shit you play around with. My hands still shake slightly all the time, and I occasionally lose a fork, but other than that, I’m okay.

Now, based on some new bloodwork that has come back, it looks like we need to tweak my Prograf levels. The UPenn folks are adding .5 mg of Prograf to my evening dose. Doesn’t sound like much, and it could turn out fine. It could also hit me like a sledgehammer. Needless to say, I’m not eager to find out.

Any change in medication takes a couple of weeks to adjust to, and while endurance is a great virtue of mine, patience is not. Regardless, tomorrow, I will be picking up a prescription for .5 mg of Prograf and starting to add it to my nighttime pill assortment. In two weeks from tomorrow, I’ll be getting more bloodwork. Then more phone calls. Maybe a quick appointment before my next scheduled follow up in October. I guess you could say this is why I really don’t like any changes to my meds. It usually means I have to think about it more, spend more time doing stuff about it, and deal with either being hyper-vigilant for various side-effects or dealing with various side-effects. Blah.

But, considering that it’s the only immune-suppression drug I’ve got left? I’ll say God Bless Prograf – any dose, any time, any where.