Guest guest Posted October 3, 2009 Report Share Posted October 3, 2009 Hi Joan, I am sorry you are facing this complex question, and I don't think there is an easy answer. When you next talk to your pulmonologist, ask her first her thoughts about Pirfenidone. If we set our sights too high on this one, we may find ourselves opting out of the treatments that show the most promise, albeit very little in most cases. Pirfenidone has not shown itself to be effective in stopping pulmonary fibrosis. In studies just completed, the pulmonary function level still trended downward in patients taking perfenidone. Only a slight slowing was evident, and that mainly in the first half of the trials. Also, those on pirfenidone showed only a slight decline in death rate from 7.1% to 3.5% during a 72 week period. Intermune will push strongly for us and our pulmonologists to use Pirfenidone, but it is my hope that it will not be at the risk of foregoing treatments that may individually have more promise. As you certainly are, as I read your post, we need to be savvy and knowledgeable about our particular situations. I certainly understand your reluctance to take prednasone, and could understand whatever you decide. If your pulmonologist had not said that the dose would be reduced after the initial dose, I would have advised against it. But if your pulmonologist can live with the idea that you can accept only a very low dose after the reduction, then I would advise you to try it, especially considering your lower numbers. You might even suggest starting at 40 Mg instead of 60. It will rest with you, but I would not advise any one to look past what is available, hoping that Pirfenidone will stop the regression. I really don't want Intermune to prey on uneducated patients looking for hope. We need to keep hope that we will have better treatment options very soon. Jerry/Muississippi/54/IPF/dx April 05 > > Hi All - > > I saw a new Pulmo-dudette ? last week and as I'm continuing to degrade and my O2 keeps dropping, she wanted to put me on prednisone 60mg/day for 1 mo. and then reduce it. > > However, I have a plethora of maladies...and am concerned about problems taking it. I read about pirfenidone (I think), but it's not approved for use here in the US, yet. > > I don't think I'll take the pill tomorrow and will call the dr. first thing Monday AM. Ideas, suggestions, experiences as nearly every maladie is contraindicated for me and I already walk a narrow line keeping everything in balance and where the drs. are happy??? > > > Joan M, in N. Calif. > Diab2 96, GERD 96, CAD 97, Glaucoma 04, CKD3 05, Osteoporosis 08, PF 08 > " life is not about waiting for the storm to pass....it's about learning to dance in the rain " > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2009 Report Share Posted October 4, 2009 Joan Unfortunately the choices aren't great. Now, you can do everything possible for all conditions other than your PF. Then as to the PF the only real choices are pretty powerful drugs or nothing. Prednisone is the typical choice but depending on your form of PF has various probabilities of benefit. Sometimes Imuran is used without it or other immunosuppressants such as Cellcept may be. The only other thought I toss out is to be certain you've been checked for PH as it can bring fast decline and there are treatments for it, if its the problem. As to Pirfenidone it has not been approved, the trials were not positive, and it wasn't even tested for anyone other than very early stage. I'm sorry I don't have better answers but you need to make your decisions and choices based on the realities. Were you on prednisone previously as it seems like you already have what are so many of the common side effects of it? > > Hi All - > > I saw a new Pulmo-dudette ? last week and as I'm continuing to degrade and my O2 keeps dropping, she wanted to put me on prednisone 60mg/day for 1 mo. and then reduce it. > > However, I have a plethora of maladies...and am concerned about problems taking it. I read about pirfenidone (I think), but it's not approved for use here in the US, yet. > > I don't think I'll take the pill tomorrow and will call the dr. first thing Monday AM. Ideas, suggestions, experiences as nearly every maladie is contraindicated for me and I already walk a narrow line keeping everything in balance and where the drs. are happy??? > > > Joan M, in N. Calif. > Diab2 96, GERD 96, CAD 97, Glaucoma 04, CKD3 05, Osteoporosis 08, PF 08 > " life is not about waiting for the storm to pass....it's about learning to dance in the rain " > Quote Link to comment Share on other sites More sharing options...
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