Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 There was one trial for Pirfenidone that just ended last Dec. But they are starting another trial soon--I've heard the first half of this year. I got into the the other trial last Nov but have yet to get started on the drug. There is also the Inspire trial for Actimmune--I am on Actimmune but not thru a trial. Jan -------------- Original message -------------- From: sarleno@... Dave, I've heard of another drug trial for "Pirfenidone", but also heard the trial is already closed to new subjects. I don't put much stock into natural remedies either, but I gues trying them beats the hell out of trying nothing. Whatever works! Arlen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2006 Report Share Posted March 5, 2006 Jan, I started a couple of weeks ago in the Actimmune trial. I'm assuming that I'm getting the placebo, as I've had no noticeable side effects so far. I'm only on the 1/2 dose so far, though. Have you felt any side effects, and how long have you been on it? Arlen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2006 Report Share Posted March 6, 2006 Arlen I have been on Actimmune for 2 1/2 years. The side effects I get are chills and achy joints--but they have gotten much better since I first started the injections. My side effects were not really noticable until I was on full dose. Jan -------------- Original message -------------- From: sarleno@... Jan, I started a couple of weeks ago in the Actimmune trial. I'm assuming that I'm getting the placebo, as I've had no noticeable side effects so far. I'm only on the 1/2 dose so far, though. Have you felt any side effects, and how long have you been on it? Arlen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 Yes I agree. What ever makes you think that you are getting or helping your self , is a positive effort and can do nothing but help. We all need to be positive and forge ahead. Dave other trials Dave, I've heard of another drug trial for "Pirfenidone", but also heard the trial is already closed to new subjects. I don't put much stock into natural remedies either, but I gues trying them beats the hell out of trying nothing. Whatever works! Arlen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 have been stable for 2 yrs--little fluctuation in PFT's Jan Jan, What do you attrubute this to? ~Ginger~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 does it seem to have helped?? Kim Re: other trials Arlen I have been on Actimmune for 2 1/2 years. The side effects I get are chills and achy joints--but they have gotten much better since I first started the injections. My side effects were not really noticable until I was on full dose. Jan -------------- Original message -------------- From: sarleno@... Jan, I started a couple of weeks ago in the Actimmune trial. I'm assuming that I'm getting the placebo, as I've had no noticeable side effects so far. I'm only on the 1/2 dose so far, though. Have you felt any side effects, and how long have you been on it? Arlen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2006 Report Share Posted March 7, 2006 I have been stable for 2 yrs--little fluctuation in PFT's Jan --------- Re: other trials Arlen I have been on Actimmune for 2 1/2 years. The side effects I get are chills and achy joints--but they have gotten much better since I first started the injections. My side effects were not really noticable until I was on full dose. Jan -------------- Original message -------------- From: sarleno@... Jan, I started a couple of weeks ago in the Actimmune trial. I'm assuming that I'm getting the placebo, as I've had no noticeable side effects so far. I'm only on the 1/2 dose so far, though. Have you felt any side effects, and how long have you been on it? Arlen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2006 Report Share Posted March 8, 2006 I am not sure what to attribute the stability to but I have been on Actimmune for 2 1/2 years! I will also be starting Pirfenidone within the next couple of weeks. I am anxious to see the results of that drug!! Jan -------------- Original message -------------- From: TongueDancer2U@... have been stable for 2 yrs--little fluctuation in PFT's Jan Jan, What do you attrubute this to? ~Ginger~ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 Arlen I have been on Actimmune for 2 1/2 years. The side effects I get are chills and achy joints--but they have gotten much better since I first started the injections. My side effects were not really noticable until I was on full dose. Jan Jan, Thanks for the info. I started on the full dose injections this week, so time will tell. Arlen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 11, 2006 Report Share Posted March 11, 2006 Arlen Let me know how it goes when on full strength. I have a friend that had no side effects and he was on the real thing. Jan -------------- Original message -------------- From: sarleno@... Arlen I have been on Actimmune for 2 1/2 years. The side effects I get are chills and achy joints--but they have gotten much better since I first started the injections. My side effects were not really noticable until I was on full dose. Jan Jan, Thanks for the info. I started on the full dose injections this week, so time will tell. Arlen 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.