I too have dealt with a horrible cough for 4 years or so, along with extreme shortness of breath (SOB) which limited my ability to move around. My pulmonologist prescribed many meds and over-the-counter products, none of which had any effect. About a month ago she recommended I try a very low dose of oxycodone (5mg 2X/day) and it has been a…

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One thing to clarify: taking Ofev does not replace mycophenolate (CellCept), the immunosuppressant. It is the primary med for us – got to get the immune system tamped down. Ofev is different – it isn’t an immunosuppressant, it’s an anti-fibrotic. It’s used to slow the progression of fibrosis, pretty successfully I believe. Even with the…

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I also have hypersensitivity pneumonitis and have been taking CellCept for 4 years with no issues. Concerning Ofev, as mentioned it is the current preferred treatment, I believe. It does indeed cause some intestinal issues but I have found that the best way to avoid nausea is to have plenty of food in your stomach when you take it,…

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I have not tried those supplements, but I am concerned about your comment concerning Hypersensitivity Pneumonitis (HP). Were you diagnosed with it? I was diagnosed with HP via a lung biopsy about 3 years ago and started meds immediately, specifically immunosuppressants. Are you being treated for HP? Also, I am taking OFEV and am able to…

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Charlene, I am so sorry to hear of the devastating losses you have been through. Finding some support and more information about IPF must be a top priority for you. I have a rare autoimmune lung disease (not IPF) that causes progressive fibrosis, and I found that there is a Facebook group for those with my disease. I joined and found a…

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I use a prescription anti-nausea med, Ondansetron, which is very effective, and Imodium for diarrhea.

I use an AffloVest for mucus removal and it works great. There are other percussive vests, too. Airway clearance is really important, and there are numerous techniques for doing it. Check out the Cystic Fibrosis foundation website – CF patients must do airway clearance, too. Also YouTube – search for airway clearance. This all takes…

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I agree with getting onto Ofev as soon as possible. It does have side effects (nausea and diarrhea, for me), but those can be managed. I take Ondansetron (a prescription anti-nausea med), which works well for me. Also Imodium for the diarrhea. I think it’s well worth the effort, and Ofev seems to have greatly slowed progression of my fibrosis.

I started Ofev after three years on CellCept, an immunosuppressant for my autoimmune lung disease. My lung function was stable until about 9 months ago, when it began a slow decline and my pulmonologist prescribed Ofev. I’ve dealt with diarrhea and nausea while taking it but have been able to manage both. I have had two pulmonary function…

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I had a dry cough for several years and tried a variety of meds for asthma, none of which cured the cough. I was referred to a pulmonologist. A CT showed the fibrosis, and pulmonary function tests showed that I had lost a considerable amount of lung capacity due to the fibrosis. I also had a lung biopsy, which identified an autoimmune lung…

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I completely agree with you, Nate.

I urge you to get a definite diagnosis right away. I had nothing but a dry cough and was treated with various meds for several years, none of which worked. I finally had a lung biopsy via VAT, a surgery aided by video which takes lung samples to be analyzed. The diagnosis showed that I had a rather obscure lung disease…

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