Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Not sure if there are others here right now, but I do know that there are others who have found actimumune to help even though the clinical trials were closed. The key is that you're not having side effects and it appears to be helping so thats incredible news. > > 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 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Hi Ken, Welcome to our Air Family Group.. We are always so sorry when new people are diagnosed with the monster but we are here to help any way we can. I was Dx in June 2004 with IPF. What a major pain this is turning into. Please feel free to ask questions, vent or contribute all you can.We are a silly bunch at times but we all know the reasons we're here so we snap back to reality quickly when necessary. Again welcome aboard. Love and Prayers, Peggy ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." 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 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Hi Ken, Welcome.... you came 'on-board' just in time to join our New Year's Eve Party down-under! , you'll know her soon enough is throwing another cyber-party and of course we all respond for the fun. Sorry you share this disease but you will be so glad you found us. Ask questions, vent, whatever. There is always some one here to help. I tend to tuck everyone under my wings and cluck at them so I'm.... Mama-Sher, ild 3-06, OR.Don't fret about tomorrow, God is already there! Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Hi Ken, Welcome to our group. We are so happy to have you join us. I'm glad Actimmune is working for you. I thought they stopped giving it to Pulmonary Fibrosis patients. I don't know anyone else on our group who takes it. I do know a lot of people believed it helped them. You are a good example of that. I pray that it continues to keep you stabilized. Stable is good. Are you on any other meds? What about Prednisone, did you or do you take it? Are you on oxygen, yet? Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> 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> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Hi Ken, Welcome to our group. We are so happy to have you join us. I'm glad Actimmune is working for you. I thought they stopped giving it to Pulmonary Fibrosis patients. I don't know anyone else on our group who takes it. I do know a lot of people believed it helped them. You are a good example of that. I pray that it continues to keep you stabilized. Stable is good. Are you on any other meds? What about Prednisone, did you or do you take it? Are you on oxygen, yet? Hugs, Joyce D.PULMONARY FIBROSIS/LUPUS 1997 BRONCHIECTASIS 2004 INDIANA 2 COR. 12:10 ....when I am weak, then I am strong.>> 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> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Thank you Joyce and all others who have responded. I have been on actimmune almost 2 years and have not had any other medication. As long as it is working I will stay with it. I am not on oxygen, have not had any breathing problems and so far have not had any problems with any activities. I am 73 years old and still run a charter fishing boat in Destin, FL. Ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Thank you Joyce and all others who have responded. I have been on actimmune almost 2 years and have not had any other medication. As long as it is working I will stay with it. I am not on oxygen, have not had any breathing problems and so far have not had any problems with any activities. I am 73 years old and still run a charter fishing boat in Destin, FL. Ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Hi Ken, sounds like your doing pretty well. I know you love the fishing in the Gulf. I WANNA GO TOO.. Love and Prayers, Peggy ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." Thank you Joyce and all others who have responded.I have been on actimmune almost 2 years and have not had any other medication. As long as it is working I will stay with it.I am not on oxygen, have not had any breathing problems and so far have not had any problems with any activities.I am 73 years old and still run a charter fishing boat in Destin, FL. Ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Hi Ken, sounds like your doing pretty well. I know you love the fishing in the Gulf. I WANNA GO TOO.. Love and Prayers, Peggy ipf 6/04 Florida"Worry looks around, Sorry looks back, Faith looks up." Thank you Joyce and all others who have responded.I have been on actimmune almost 2 years and have not had any other medication. As long as it is working I will stay with it.I am not on oxygen, have not had any breathing problems and so far have not had any problems with any activities.I am 73 years old and still run a charter fishing boat in Destin, FL. Ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Joyce/Ken They 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 > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Bruce, I talked to the folks at InterMune about the studies and too many patients were having too severe side effects to continue. My Dr said he had several patients who had to quit using it. I feel blessed with my treatments. Ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Welcome to the Board Ken..glad the Actimmune is working for you...I'm from Australia, not using any drugs & so far not on O2 either. Listen have you caught wind of a 'Special' New Years Eve Party going on in Sydney Harbour...please do jump aboard & join in the fun! It's a CYBERSPACE party...you only need a sense of fun & a bit of imagination & you can have the BEST time! Hope to 'see' you there... in Oz >> Thank you Joyce and all others who have responded.> I have been on actimmune almost 2 years and have not had any other medication. As long as it is working I will stay with it.> I am not on oxygen, have not had any breathing problems and so far have not had any problems with any activities.> I am 73 years old and still run a charter fishing boat in Destin, FL.> > Ken> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Yes, while many had severe side effects and there was considered to be greater risk than benefit rather quickly, the reality is ignorance is bliss and you didn't have those side effects. There are others who have had the same experience as you. We'll never know from the clinical trials how many felt they were benefitting and were not having the side effects as taking the chance was just too risky. However, again, you took it not knowing the level of risk but I'm sure knowing there was some, and you're doing ok, so thats just good news. It's interesting that it is still an approved medication for two other conditions. > > Bruce, > I talked to the folks at InterMune about the studies and too many patients were having too severe side effects to continue. My Dr said he had several patients who had to quit using it. I feel blessed with my treatments. > Ken > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 29, 2007 Report Share Posted December 29, 2007 Thanks , I'll try to be there. It sounds like a wild bash. I have been to a couple of Aussie parties in Vietnam and Singapore. But that was a long time ago. Ken Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 30, 2007 Report Share Posted December 30, 2007 > > Thank you Joyce and all others who have responded. > I have been on actimmune almost 2 years and have not had any other medication. As long as it is working I will stay with it. > I am not on oxygen, have not had any breathing problems and so far have not had any problems with any activities. > I am 73 years old and still run a charter fishing boat in Destin, FL. > > Ken > Quote Link to comment Share on other sites More sharing options...
Recommended Posts
Join the conversation
You are posting as a guest. If you have an account, sign in now to post with your account.
Note: Your post will require moderator approval before it will be visible.