Pretty much every person who knows or finds out about my transplant eventually asks me about my medications. It's a reasonably well know fact that transplant patients have to take medication for the rest of their life. I am no exception. With so many questions about these meds, I thought it might be useful to post up a detailed list and description of my medication list so that people know what I'm dealing with here. Right now I take two medication twice a day, every 12 hours. For me, because of my work schedule, that means at 7am and 7pm. The combinations are slightly different in the morning than the evening, both because some meds only need to be taken once a day, and because when I first got out of the hospital I have lots of trouble with nausea, like 24/7 nausea, and one solution was to cut down taking all my once a day meds at once. All that has changed, though as my medication has slowly gone down in the last 7 months. Anyway, here's a list of the medications that I take and a brief description of what the do:
AM Medication:
1. Prograf (Tacrolimus) 2.5 mg - Prograf is an immunosupressive drug whose main use is after organ transplant to reduce the activity of the patient's immune system and so lower the risk of organ rejection. This is my main ant-rejection medication and one that I will be on for the rest of my life. The dosage may change, but it likely at the lowest it will go for me. Many people have side effects with Prograf at higher dosages (common for other type of organ transplant, especially kidney and liver, but not for heart), as far as I can tell, I've had no side effects. One of the most serious side effects is nephrotoxicity.
2. Prednisone 5 mg - Like several of the medications on this list, prednisone has a number of uses, which are too numerous to list here, but it is is particularly effective as an immunosuppressant, and affects virtually all of the immune system. It can, therefore, be also used in autoimmune diseases, inflammatory diseases asthma, severe allergies, rheumatoid arthritis, among many others. It common for many transplants patients to start on prednisone, but eventually be taken off of it. I, however, will be on prednisone for the rest of my life because my doctor "doesn't believe in steroid-free". Yes, it is a steroid, though as far I can tell, it isn't making my muscles huge. It does have some typical steroid side effects, most of which have faded as my dosage has gone down (5 mg is the minimum dose). At one point, I had a moon face, abnormally fat from the steroids, as well as more black heads (especially on my forehead) than I've have in 20 years. Another side effect of prednisone is Steroid-induced osteoporosis. Because of this, I wasn't allowed to begin mountain biking in earnest until recently. It also require me to take the next "medication"
3. Os-Cal (I don't know the actual dosage off the top of my head, to me it's one tablet) - Os-cal is a calcium supplement fortified with vitamin D. It's a huge green caplet, but it's coated so it isn't too difficult to take. I take the Os-cal to counteract the steroid-induced osteoporosis caused by the prednisone. As with most supplements, it doesn't seem to have any side effects. As I said, my doctor doesn't believe in steroid free so I'll be on this one the rest of my life. Not a big deal unless it somehow gives me kidney stones.
4. Arava (Leflunomide) - This could be the strangest of all my medications. It's also the newest. Back is March, after my 8th and final biopsy, it was found that my white blood count had dropped to nearly nothing. My Dr. attributed it to a sudden sensitivity to my medication Cellcept. Which made sense to me. In about of blind optimism I wondered if this was evidence that my body was accepting the new organ. Here was my logic. Because of the transplant, my body had received a foreign body (my new heart). My immunoreponse of course is to get rid of this foreign body (rejection!). To prevent rejection, I take immunosuppressive drugs which suppress my white blood cells. Baasically the immune system over produces white blood cells, and the drugs suppress this. But what if the body accepted the foreign body? Would that mean that the body suddenly doesn't need to over produce the white blood cells? I don't know, but this was my thinking. If my body stopped over producing, then an immunosuppressive drug would cause the white blood cell count to go waaay down. So, does this mean that I'm accepting the new heart - I don't know, but I'm certainly not gonna change what I'm doin unless my Dr says so - I recommend the same any heart transplants who read this. So the Arava - the Doctor took me off the Cellcept and a couple weeks later, after my white blood cell count returned, they put me one Arva (Leflunomide). Funny thing - Arava is not an immunosuppressive drug - it is a rheumatoid arthritis drug. It is a rheumatoid arthritis drug that has both immunosuppressive side affects and anti-viral side affects. Yes, I'm still have trouble with the BK virus and that was one of the reason why he put me on that. The rough thing about Arava is that out of all my meds it has the worst side affects. That's not saying much though, and they aren't that bad. I had pretty frequent GI issues, about every other day - I'll just leave it at GI issues. Also, I have an on-and-off rash on my hands.
This is the first installment of two, with one more about my PM meds. At the end of that I'll ruminate a bit on my meds and I will give some hints of what I know about my future with my meds.
