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5:20pm September 12, 2014
[Picture of me holding a medicine box with a bottle next to it.  It says CellCept Oral Suspension (mycophenolate mofetil) for oral suspension 200 mg/mL.] This stuff scares me. It scares me less than the alternatives that were laid out for me by my neurologist yesterday.  But it scares me. I didn’t want to be messing with my immune system this much.  I wanted the IVIG infusion, which ultimately gave me meningitis, so that isn’t going to work.  But this stuff is the same stuff they give to people who’ve had transplants, to prevent rejection.  And that seems kind of heavy-duty, even though he told me it could be a lot worse in terms of immune suppression.  But it does suppress the immune system, so he says I have to be “careful”.  Like not completely terrified, but careful to try to avoid germs and stuff.  So probably like when I was on a lot of Prednisone in the past.  Considering I’m combining this with dexamethasone which also has some immune suppressing effects. But seriously, the other thing is it takes six months before you know whether it’s working for myasthenia gravis.  So I’m going to be on this scary med for at least six months (barring any side-effects that make me have to stop) before I even know if it’s doing anything. I took my first dose this morning. And the scary thing is this does seem less scary than the alternative, which he described as something like “having your immune system washed out through your blood through a central line sort of like dialysis”.  But this is pretty scary-looking stuff in its own right. Arrrgh.

[Picture of me holding a medicine box with a bottle next to it.  It says CellCept Oral Suspension (mycophenolate mofetil) for oral suspension 200 mg/mL.]

This stuff scares me.

It scares me less than the alternatives that were laid out for me by my neurologist yesterday.  But it scares me.

I didn’t want to be messing with my immune system this much.  I wanted the IVIG infusion, which ultimately gave me meningitis, so that isn’t going to work.  But this stuff is the same stuff they give to people who’ve had transplants, to prevent rejection.  And that seems kind of heavy-duty, even though he told me it could be a lot worse in terms of immune suppression.  But it does suppress the immune system, so he says I have to be “careful”.  Like not completely terrified, but careful to try to avoid germs and stuff.  So probably like when I was on a lot of Prednisone in the past.  Considering I’m combining this with dexamethasone which also has some immune suppressing effects.

But seriously, the other thing is it takes six months before you know whether it’s working for myasthenia gravis.  So I’m going to be on this scary med for at least six months (barring any side-effects that make me have to stop) before I even know if it’s doing anything.

I took my first dose this morning.

And the scary thing is this does seem less scary than the alternative, which he described as something like “having your immune system washed out through your blood through a central line sort of like dialysis”.  But this is pretty scary-looking stuff in its own right.

Arrrgh.

Notes:
  1. withasmoothroundstone posted this