16.9.17

CRION over youuuuuu,...

Pardon the musical pun (but at least it's better than this one, which apparently has no relevance for the 30-ish and under crowd).

Anyway, as of this week we have a definite diagnosis for my eye.  Last week, a mere two days after stepping down on the Prednisone - and trust me, you do not ever want to go on a high-dose of that drug as the side effects are nasty - I started to relapse.  Fast.  Emergency trip to the doctor and yes, confirmation.  I have CRION.  It's something, like my lack of a gallbladder or missing cartilage in my knees or being a mere 5'4.5", that I'll be living with my entire life.  And the level of Prednisone I need to prevent further relapses is not sustainable over the long term.

It also means that starting yesterday, we (my doctor and I) will be monitoring my liver and kidney functions as my immune system won't be working due to CellCept, a drug that usually prevents donated organs from being rejected by the donee's body.  The good news is that the side effects, beyond an increased susceptibility to the average cough and sniffle, are minimal.  No more heart palpitations.  No more "post-vomit" mouth taste (one of the better Prednisone side effects!).  No more tremors.  And, with luck, no more relapses or fear that this will cross into my right eye.

Unfortunately, CellCept takes a couple of months to really take effect.  And you can't just stop Prednisone, you have to taper it off.  Plus, see above re: needing high levels to be able to prevent relapses. So I'll be taking both for a while.  Ugh.

Still, it could be so much worse.  I could be unable to work, or read, or watch tv or live a normal life.  I could live in Florida or Texas, trying to rebuild my life after Harvey or Irma.  I could have an incredibly serious disease that won't easily be controlled by taking pills daily.  I could be a Mets fan.  Or a Jets fan.

1 comment:

Alice in Infoland said...

As my brother used to say to a friend who was always 'catastrophizing' - "look down at your feet. Is there a pool of blood there? No? then go on with your life." IOW: it could be worse, and it isn't.
Good luck with the side-effects; that can sometimes be worse than the actual cause! (BTDT)