My cyclosporine taper started this summer. For upwards of three years now, I've been taking 300mg/day, but in June I lopped off 25mg/day. July and August both also subtracted 25mg from my daily total, so this month I'm down to only 200mg/day. That monthly step down will continue until the last 75mg, at which point I'll drop 25mg every two months instead of every month. All told it's a 15 month process.
I have mixed emotions about the taper. Certainly it would be great to be off the medicine, and not pop my small handful of pills twice a day. It has side effects that I could do without, like hair growth and acne. And I wouldn't have to worry as much about elevated BP or bilirubin levels (nor would my parents). But the daily drugs have become a sort of a security blanket; something I can do, something I can control, that helps me feel slightly less powerless against Aplastic Anemia. As long as I keep taking them everything will be fine, is what I've convinced myself.
If the taper is succesful, and I'm off the cyclosporine, that doesn't mean I'm cured. In remission is probably more accurate, since I'll still need to see my doctors on a regular basis to watch for any relapses in my counts. That's my real fear, that I will eventually relapse and not be as fortunate the second time around. This time I've managed to contain the disease(s) with ATG and other chemical means. I started out as severe AA and slowly it climbed up and out to moderate AA. But what if next time I can't climb on my own to the moderate range? That means I get a BMT, the elephant in the room of anybody fighting AA.
Fortunately for me, the rational side of my brain usually starts to take over. I know that refusing to taper and just staying on the cyclosporine forever won't necessarily protect me from ever relapsing. If my counts are gonna drop again, there really isn't much I can do about it, so there isn't any point in stressing over it. And thanks to this blog I've met some great people, many of whom are BMT survivors. Their stories of survival help me know that you can beat AA, and still manage to live a long and happy life.
Note: Some of the great people I've met have their own AA blogs. I've started to list some of those blogs out in the navigation section of my site (on the left of the page, at the top) under the "Others" header. I encourage you to visit their sites and check out their stories too.
I'll see Dr. Cho next week. Since the taper started I've been getting a CBC each month, and pairing that with an actual doctor visit every other month. If I can dig up my results from the last couple CBCs, I might make another chart specific to my progress related to the taper. You can never have too many charts, right?
Also next week, I see my new primary care physician. For the last few years I've been seeing oncologists/hematologists so often that I usually just bring up non-AA issues with them, instead of seeing a general practicioner. And that's not enough, really. I need to have a separate doc who will be paying attention to the non-AA related ailments I might have. And by doctor I mean nurse practicioner, since that's who I'm signed up to see. She can apparently do almost anything the doctors can do, and when I met her the first time she didn't even bat an eye when I mentioned having Aplastic Anemia. So I'm sure she'll be great. The only problem I'll have is how to address her. Nurse Practitioner Kimball seems a bit formal. Too many syllables. But NP Kimball doesn't sound right either. Maybe just Diane?