Biography

Diagnosed in 2015 with IPF.  Went on 2 year clinical trial with Fibrogen-good results.  However, because it was Phase 2 they made us stop the trials.  Experienced a fairly significant drop in stats by early spring (off trial in November).  Pulmo doc wanted to do a second round of PFT’s in 6 weeks-did that and showed a slight drop.  I went on Ofev 150 in July.  Stayed on for 3 months-had recheck of stats and showed significant improvement (back up to trials stats).  However, drug caused severe diarrhea and weight loss and a limited life style so dropped to 100 where I am today.  Still fight diarrhea but not as bad and not as sick.  Weight loss has slowed but not stopped.  However- my feelings are without the drug of hell (lol) I will die sooner so I press forward taking it.  It’s now December so hanging in there.  Always looking for a new trial drug that will accept Ofev AND not go by way of my gut as can’t take any more worsening of diarrhea and I think any drug that goes through the intestinal tract will have similar side effects.