I have been told I have this and that there is no treatment or help. The doc said, it is not cancer, copd, or emphysema. Other places I have red about fibrosis and they recommend prednesone, but when I asked the doc about it he saidI didn;t need it or it wouldnt; do any good or something. I need to do something to help me breath enough to work, but he didn;t offer any suggestions. I also suffer severe depression and this is close to pushing me over the edge. So I guess I am asking if someone else is getting treatment of this disease? Should I get another doc opinion or what. Please help.

Are you going to a pumonary specialist? I am sure there are medications out there that can help you. Yes, I would definitely get another opinion.

Yes , tht was from a pulmonary specialist. May look to see who else there is in town that is on my insurance. Orrrrrrr, may just give up.

No don't give up! Yes there is a hi probability that prednisone won't help - if you have IPF (idiopathic pulminary fibrosis) since there is no real inflamation. What test's have been run? (they did lot's of blood work on me, a bronchoscope, and a lung biopsy before diagnosing IPF) Trying a low dose of prednisone may be worth it in some cases. Glutathione has shown some positive results (it's a natural anti-oxident), and is easy to try. You can buy glutathione pills over the internet or in a local health food store. I develope a rash to the pills, so we're trying increasing the building blocks for glutathione to see how that works. Lots of fresh spinach, apples, carrots, avacados, etc. and 500 milligrams of vitamin C twice a day (the C helps kick the cells into producing glutathione). I'm also on Actimmune, also known as Interferon Gamma B, it's currently approved by the FDA for testing on PF patients... But it's terribly expensive and probably why your Doctor didn't bring it up. Is the insurance an HMO? I'm definatley with the get another opinion crowed! I was diagnosed in December, and my lungs are currently at 42% of capacity. But I had pneumonia in March and was down to 36% and have recovered some since. I believe it's the Actimmune and Glutathione that did it since you don't usually get any back with IPF...
It may be too early for you to read this, so I'll put it this way - I consider this a new adventure. I look at life a lot differently today that I did a year ago, some things are not worth stressing about - that I use to be bothered by. I hug my family every day and absolutly take time to enjoy every day, even the tough ones!!! An option down the road is lung transplant, but that's traiding one set of problems for another, not a cure. Please feel free to write me about this if you want, I'm comfortable talking about it. Currently my goal is to beat the averages, and have fun every day doing it!

Jeff

Just reading your post encouraged me and I'm not even sick! If anyone will beat the odds it will be you with your attitude! Keep it up!

well my husbnd has had pulmonary fibrosis and asbestosis and the only thing that the drs give him are the inhalers he gets sever bronchitis at least 2x a year and we too were told there is nothing else that they will do for this unfortunally since he is under the care of the va that there is no other medical option for him he is under the va care 100 percent he contacted his off a ship on the boiler room in the navy in 1954

I totally agree!!

Thanks so much for all the support. With my depression and other physical problems, it is almost more than I can take. Yes it is idiopathic pf, so they don;t really know what caused it. I also didn;t see in my last report what my capacity is, just know that it has gotten a lot worse in the last 2 months, but seems to be stable at the moment. So.......I will probably try to make it for the month till the next checkup and go from there. If I can keep working 4 days a week, I can keep my insurance. I will look into the glutathione. I'm trying to take a "wait and see" attitude. Hope it works. Thanks again.

Thanks for the replys and updates on information. I'll pray for you all. About the lung tests - get your Doctor to show them to you - in fact make them give you copies of them and make your own folder for your medical history. Store a list of medications you take, and that you are alergic to (if needed). Keep a brief journal of Doctor visits and results and also events like adding new meds or supliments (so you know when and what was changed) and your copies of tests etc. in that folder. You'll be surprised how many times you need to know the stuff - even for a visit to the dentist! (I went yesterday and didn't have my list of meds with me and had to call back). This will help you keep track of you! After all it's a Doctors job to treat patients, but it's your life your dealing with!
Not to offend anyone - but also remember that Doctors are all 'practicing' medicine :)

Jeff