Guest guest Posted December 30, 2007 Report Share Posted December 30, 2007 Ken - I have a friend who is on it. She's been on it for over 2 years and feel it has kept her stable. Unfortunately, I know of too many more people who died while taking it. It could not be given to folks that were too far progressed in their disease. Glad to hear that it's working for you. It just goes to show you that we are all different and what works for one may not work for another. Happy New Year. LeanneBruce Moreland wrote: Joyce/KenThey stopped all clinical trials and did stop any pursuit of getting it approved for PF as the results were not good. However, there were some on it off label and many like Ken have continued it. Apparently some are not experiencing the negative results the clinical trials indicated. I wouldn't think any doctor would risk prescribing it to a new patient now.> >> > Hey group,> > I just joined last night to learn more about living with our dreaded> disease. I was diagnosed with IPF through a lung biopsy in Jan 06. I> have been receiving treatment for nearly 2 years with actimmune> injections 3 times a week. My last three 6 month x-rays have shown no> spread of the fibrosis and no change in breathing tests results. The> actimmune is working and I am not having any of the terrible side> effects.> > Is anyone else out there on actimmune and for how long. Thank goodness> for Medicare and tricare for life, it is a very expensive medication.> But what is a life worth?> >> > Ken Beaird> >> Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
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