My Anti-Rejection Rx

Also called immunosuppressants.

Following my transplant, my doctor started me on varying dosages of Prograf and CellCept until he was satisfied with the levels of my lab work. A few months later, he added Rapamune. These were my main "immune suppressing" medications for the next several years. Each affected me in different ways. You may also click on prescription name for other side effects as well.

Prograf: 

Prograf caused me to feel very anxious at first. I remember the feeling of a "hot tingling" in my face and neck. There were moments of confusion, seemingly forgetting what was just spoken. We called these "prograf moments". :) I also had trouble reading. It seemed the letters danced on the page. I also lost my appetite, which never really went away. It comes and goes, and I fill in with Ensure nutrition drinks when I don't feel like eating. In time, the tingling went away, but my blood pressure elevated, and the doctor added a blood pressure medicine to my regimen. I remain on BP medication today.  I began taking 4 in the morning and 4 at bedtime. Now I have leveled off to 1. 

Dosage: Today I take 1 (1mg) Prograf each morning, and one at night.

CellCept: 

CellCept can also cause high blood pressure, as well as anxiety. Anemia is also a side effect of CellCept, and I typically run just below normal on iron levels. It also causes water retention, so I take a diuretic to help rid of excess fluid. Other than an occasional rash on my legs, CellCept was a fairly friendly medication for me.

Dosage:  I take 2 (250mg) in the morning and 2 in the evening.  We have fluctuated this at various times but this dosage seems to be best for me.

Rapamune: 

Rapamune, on the other hand, was the devil. It didn't like me and I didn't like it. I spent nearly 6 months staying as close to my bathroom as possible until my system finally adjusted to it. Rapamune raised my cholesterol levels, hair loss, facial hair growth (which was really weird), decreased blood platelets, joint pain, intestinal issues, and I had constant canker-like mouth sores. More medications were added to counter the side effects of the Rapamune. Only recently, my doctor removed Rapamune from my drug list, and I now take only the above two medications for immune suppression. After being on Rapamune for 12 years, I felt amazing going off of it. 

Dosage:  Dosage varied over the years, depending on my health and my lab work. But for years, I took 2 (1mg) at noon every day. If I required surgery of any kind, I would be weaned off the medication for two weeks, have the surgery, then slowly go back on it. Rapamune impedes healing. I am Rapamune free today! 

These have been my immune suppressing medications since my transplant in August of 2001. All weaken my immune system. People often brought me natural things to "boost" my immune system. But that defeats the purpose of the immune suppression. My immune system must be suppressed so that it does not try to destroy the new liver, as well as the remaining vital organs.

(Update as of 2015- I no longer take this medication)