Wednesday, December 9, 2015

Fourth State of the Cassie Address

I had a follow up appointment with my rheumatologist on Monday. It went well, I think, but the state of my health/disease right now can be pretty well described with shoulder shrug.

Remember my post about blazing medical trails?  The problem with doing that, is that there is no set procedure for now.  Some people get the infusions and that's it, they're done.  Some people go on some sort of maintenance drug.  There's no set path to follow.  So my doctor basically said "you seem to be doing well. I don't really know what to do with you now."  (But he said it in a competent way.  I don't in any way feel like he's not taking care of me).

There is a drug trial study thing that he's going to see if I qualify for.  I probably don't.  I'm sick enough.  The trial probably is more interested in people with kidney or at least lung issues.  I don't have that.  Even my blood work, except for that one very specific anitbody test, has not really been that far off normal.  As a data point, I'm not very useful, because there's not very good things to measure.

My doctor was really impressed, even surprised, by how much my throat has improved.

He told me to reduce the amount of prednisone I'm taking to 5mg a day, and if I don't feel terrible, I can stop taking it on January 1.

He's running some blood tests.  We'll see what they show in a few days.

Basically, I'm kind of, maybe, done?  It's still going to take time for me to be back to full health, or as close as I can get, but getting there at this point is just a matter of waiting and letting the rituxan do its thing.

I really am feeling better every day.  I would say right now I'm functioning at about 70% normal energy levels, which is pretty good. I can breathe much better with my throat more open.  My nose is still pretty junked up, and that may or may not get better without some sort of procedure/surgery.

All in all I'm doing pretty well.  Hooray!

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