This is another of those posts that I've put off mainly because I don't know how to start it or really what to say but it just feels dishonest not to talk about. But this week I hit kind of milestone and if I don't do it now it will never get done. So here it goes.
The Milestone: After nearly nine months I'm completely off Prednisone. I hated it. It probably saved my life, or at least my liver.
Last year about this time, in an even totally unrelated to MS as far as anyone can tell, my immune system decided if it wasn't allowed to F with my central nervous system, it wanted a different piece of me and decided on my liver. My immune system hates me.
Last September I started having some strange symptoms that we attributed to some random viral thing and thought would go away given time. It didn't. Then one day the Dr. looked me in the eye stopped dead in his tracks in a dimly lit hallway and said you've got jaundice - I'll get you in to see someone tomorrow. The next day I gave them pints and pints of blood and cups and cups of urine. Turns out my liver enzymes were "elevated" 30ish being normal - mine where 1100. Not good. I was told to not even be in the room with alcohol and come back in 2 weeks for more tests. Good news.. they went down to 800ish but leveled off there. Everything else was clean as in no viral hepatitis so we continued the wait and see method. They stayed high never getting below 500.
After several months of this I started to worry. I knew my liver couldn't take this forever. And by the way if you have ever heard that "if the liver ain't happy, ain't nobody happy" adage.. it's true. A sick liver sucks. So since the paid professionals weren't getting anywhere I got myself on the Internet and started self-diagnosing. It took a day. The Dr. came home and I handed him my evidence - "this is what's wrong with me, run the tests" I told him. He was skeptical but did - and also pushed me up pay-scale to see a liver specialist.
That guy looked at all blood work and concurred with me - Autoimmune Hepatitis. My own body was attacking itself again. MS and this in the same person are extremely rare - but hey I'm lucky that way. One liver biopsy (2 weeks before Christmas) and it was official. Bring on the steroids.
I was glad to know that what was wrong me, like my MS, was very treatable and was generally easy to control with drugs. The prednisone got immediate results and I was in normal ranges by late January. At which point I started other non-steroid immune suppressors. The type of things that transplant patients take. But those take a while to build up in your system and start working so the pred and I stayed tight.
It took awhile but eventually the side-effects came to visit, the weight gain, the moon face, fluid retention behind the neck (humpback), the insomnia. The moon face was what bothered me the most. I didn't look like me, even though I was getting better.
But all has gone well and after 5 months on my cocktail they started a VERY SLOW taper of the pred. By slow I mean months... but this week its over. I am officially steroid free. My camel hump is gone behind my neck. My face is getting back to normal, and I need to figure out how to loose the extra pounds that probably weren't entirely the fault of the steroids - unless you count the depressive aspect of the whole damn ordeal.
So that's it, now I add AIH to my identity because it's always going to be a part of me. I'll take these suppressors for the foreseeable future. Can't take my interferon anymore though. I meet with the neuro next month to get his take on that. It is going to be a fun visit. I get the feeling he's going to want to write a paper on me. He's that kind of guy.
So that's it, nothing funny or witty about this... just a personal thing to note, acknowledge, own, and get on with life from. It's changed me, much more than MS ever did. It was scarier and more life-threatening. And now I had the kids to think about. The change in my face was a bit of a metaphor for what I was going through inside, I wasn't the me I knew anymore. But just like the face, I'm getting back to me, a little more weathered and worse for wear, but at least a me I know...