Pulmonary Fibrosis Support Group

Dr. O
So glad you posted this.
My Mother, Father, and Mom's brother all had and died from IPF or it's complications.
My research showed that it's more commn East of the Mississippi. Have you heard that? My internist says that he thinks there were certian molds, toxins in the soil. who knows, that's why it idiopathic, right? :)
Anyway, have you heard about this many people in one family having it? I read it's not genetic..Is that correct?
Haven't looked at any research for years so was hoping to learn more on here but don't thing there are any members in this community, right
I don't know anything about this drug. How new is it?
Do you have any patients on it currently?
thanks Judy

I don't like to be negative, but I don't like false hopes to arise either. I thought the medical community gave up on prednisone years ago .....I know that doctors still widely prescribe it, but with little hope it will really do anything

In response to a message: no new published studies on pirfenidone and IPF but I will keep you posted
swiftybob: this is NOT prednisone
Dr O.

Is Pirfenidone a steroid? I haven't heard of this. I have steroid reactions which makes it hard for teatment.

My Dad has just started in the study - obviously we don't know if he has the placebo or not but we are hopeful he has the real thing. I guess we have to wait and see.

Duke University in North Carolina has a Familia Pulmonary Fibrosis Department that studies Families who have 2 or more memebers of their family with Pulmonary Fibrosis. Sounds as if they would be very helpful for your family. Try logging onto their website for more information. I am the only one in my family with this awful disease. Good luck and please let me know if this was helpful. God Bless

I have been following the progress of Pirfenidone and am optimistic about it's outcome. I heard recently that it has complete its trial in Japan, where the drug was first developed and has already gone before their type of "FDA" and they are all waiting to see if that entity will approve it for use for PF patients. I have my fingers crossed! That will at least give it more support here in the US I would think. No one is able to get it here while it is in its trial mode, unlike, Acctimune. Many PF patients were paying for it out of their own pocket to the tune of $4 to $6k a month :( That was hard for them to pay for to just find out in the end that it wasn't approved and they had to stop taking it. It seemed to help some patients I knew, while they were taking it, but once they were taken off of it for whatever reason, they dropped back fairly rapidly to their level of progession that they were at when they started taking the drug. No one seemed to know why. No one knew either how long it was safe to keep a patient on the drug, that was another reason some patients stopped the therapy to just find out they progressed right back to where they were.

Surely something will become available sooner than later for some of us....I hope anyway:)

Dr. O: I just logged onto Pulmonary Reviews.com and there was an article titled "New Hope For IPF Patients?" Pirfenidone Shows Promise in Clinical Trials. Talk about some hope! Yes! There is a study being conducted in Tokyo in which research suggests that pirfenidone, is a novel agent with anti-inflammatory, antioxidant, and antifibrotic properties that may reduce exacerbations and improve lung function in IPF patients. The fact that the clinical study done in Japan was terminated early because the reduction in exacerbations was so significant that the review board wanted to allow all participants to take the drug. THIS IS GREAT NEWS! I am eager to hear more.

Is that the October 2007 issue of Pulmonary Reviews?

Dr.O
I am so glad I read your posting my father has IPF and we were trying herbal and it was working for a while, but his O2 levels drop to 65-68% when he is walking and they say he has pressure in his lungs. I need to read up on this new medication. This disease has taken 2 of my fathers sisters and now it has him but I wont let him give up the fight.