Guest guest Posted May 6, 2008 Report Share Posted May 6, 2008 I just got back from my 20-month eval. in the Pirfenidone trial - and it was great! No changes. Yeah hoo! (Of course I don't know if I'm on placebo in all fairness).....but still, I was thrilled. I didn't walk quite as far on the six minute walk, but my ankles were killing me so I think that was why. I ended up in the hospital several extra days for some other health issues they found related to HPS. But, after the drama, I'm home now. Grin. Hermansky-Pudlak Syndrome/PF 06 www.heatherkirkwood.blogspot.com Quote Link to comment Share on other sites More sharing options...
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