Happy St. Patrick's Day! An update to this AA blog is long overdue...
Little has changed for me since my last post. I still have aplastic anemia, and I still take a small handful of cyclosporine pills every day (and even though I'm used to them by now, they still stink). My west coast doctor, Dr. Maziarz, referred me to yet another doctor who was much closer to where I lived. So now I am under the local care of Dr. Ben Cho. He seems like a good doc, and possibly even a fellow nerd too, if the hobbies listed in his profile are any indication. He also used to work at OHSU with Dr. Maziarz, so he is quite familiar with Aplastic Anemia.
About those stinky cyclosporine pills, I had a little incident at the pharmacy a few months ago. They switched me to a different brand of pill, one that was smaller and not at all stinky. I was very happy to start taking this new brand, until I found out a month later that the pharmacy had made a mistake and the pills weren't the right cyclosporine formulation. You can read the whole story here, on my other blog. The lesson learned for me was to never underestimate how little some medical professionals I come across will know about Aplastic Anemia, or about how I specifically am being treated. Exceptions to that rule are made for my actual doctors (Klix, DiPersio, Maziarz, Cho) and anybody else that has "Hematologist" after their name. Suffice to say, I need to always be my own strongest advocate, and stay as involved as possible in decisions affecting my own health.
In other news, I recently rebuilt my non-AA blog, and now that I'm on Wordpress I've started tagging my posts in a way that lets you search them by keyword. While that site isn't specifically dedicated to AA, I have posted a few thoughts now and then related to my condition. If you go here, you'll find a list of all of those Aplastic Anemia tagged posts. As I type this out today I've only gone back and tagged about a years worth of posts so far, but eventually I'll get through all five years of archived posts.
So what's next for me?
This summer is the 5th anniversary of my initial AA diagnosis, and the start of my treatment. That's going to be a pretty big milestone, since the doctors have said all along that 5 years is when we start to consider tapering off of the cyclosporine. I'm anxious about that taper, because while it could mean I end up off the drugs (hooray!), it could also mean a relapse (boo!). A best case scenario relapse would mean I just go back on immunosuppressive therapy (IST = ATG + cyclosporine), but a less than ideal response by my blood could mean a bone marrow transplant.
To prepare for the taper, I've been cleaning up my diet and adding more exercise into my daily routine. Really though, while that will help my energy level and possibly also my waistline, it won't likely do much to stimulate my hematocrit. So I'm going to do my best to not stress over it.
I'll post again this summer after I see Dr. Maziarz about the taper. Enjoy the spring, all.
UPDATE 4/26/2010: I noticed that "cyclosporine dose" (or some aplastic anemia variant) was a very common Google search referring visitors to my site. For the record, I take 150mg BID for a total of 300mg/day. Based on my weight, that works out to about 3.75mg/kg/day. I don't recall the date we settled on this dosage, but I've been on 300mg/day for at least a couple years now.