Guest guest Posted March 26, 2008 Report Share Posted March 26, 2008 , Good morning! I'm so happy that you're finding friendship and support on this board. I've been here well over a year and a half and honestly these are some of the best people I've ever known under any circumstances. I hate this disease as much as anyone but I can't regret the blessings it has brought me and this group is one of them. You asked a question about the effectiveness or lack thereof of prednisone in treating IPF. The bad news is that prednisone has not been shown to be effective in slowing down the progression of IPF or I believe UIP. There are some people who believe they have been helped by it but for the most part prednisone is something that some doctors will give to an IPF patient because there is literally nothing else they can do. The good news is if he has a different form of fibrosis (there are over 200 varieties) prednisone might be an effective treatment. For HP (Hypersensitivity Pneumonitis) or NSIP (Non Specific Interstitial Pneumonitis) and others prednisone is often effective in arresting the progress and stablizing the disease. That was the case for me. I was on up to 100mg of prednisone from June 2006 through February 2007 before I was weaned off. My side effects were unpleasant but my doctor was aggressive in helping me manage them. My belief is that initially the prednisone helped save my life and then stablized my disease. I've been off now for just over a year and I continue to be stable. God is good! Has your husbands type of fibrosis been identified? You might want to have a conversation with your doctor about the meds your husband is on. What do they expect the meds to do for him? And if they feel he has a form of fibrosis that can be helped by the pred, then what kind of help can they give you in managing the side effects he may be having. I was on Nexium and Carafate for my stomach. I was taking insulin because in high doses the prednisone made my blood sugars go crazy. I was on Zoloft because I was having rather wild mood swings. I had awful insomnia but there was nothing I could take for it because everything suppressed my respirations. I think you also mentioned that Don has a horrible cough. About 15 months ago Dr. Simonelli at Columbia Pres in NY suggested I use Advair for the cough and it has worked well for me. I use the Advair 250/50 twice a day. It might be something to ask about. , just ask lots of questions. There are good solid medical reasons to use prednisone and some of the other meds for many patients. Have you been to a university medical center? I'd have to look at a map to see what's closest to you but you can always contact Leanne at the Foundation for more info or go to the Foundations website. www.pulmonaryfibrosis.org No one can give you medical advice but your doctor. We share our experience, points of view, and opinions here. There's alot of combined wisdom here and I learn something every day. Everyone though has to decide what's best for them. Beth in NC age 48 Fibrotic NSIP 06/06 "For as long as I shall live, I will testify to Love." Quote Link to comment Share on other sites More sharing options...
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