SCLERODERMA–Has anyone reduced AP????

[Cubby]

I recently reduced my AP from 100 mg 2 x a day to 100 mg 1 x a day.  I started Sunday.   Remember, I also do PHOTOPHERESIS.

My question is:   Has anyone with Scleroderma reduced their AP and if so, what was the result.    (I take Minocin)

 

[Kim]

Hey Cubby,

When I was first diagnosed with SD I took the standard 200 mg daily dosing, but felt awful on that dose, so my doc let me pulse M/W/F with 200 mg, and I did quite well.  Later we added a round of IVs and Zith.  When the treatment stalled, we realized I also had Lyme (which actually caused my SD and RA) and am now treating that.  My SD symptoms are almost totally gone.

We're all spooked to use the “R” word, but I'm darned close.

kim

[SusanSD]

Cubby,
    I think if you are doing well that it's worth trying a gradual reduction like you're planning. I hope to get to remission and do just that. My goal would be to get to Kim's pulsed schedule.
  

[Author]

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