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Starting OFEV?
How long after you were diagnosed with lung problems did your doctor prescribe OFEV? And what drugs were you on to start with?
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7 Replies
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I was diagnosed in 2021 in Richmond Kentucky. I have recently moved to Hope Arkansas and gotten established with a new pulmonologist in Texarkana. He has just started me on Ofev. I’ve taken it a month. Side effects have been minor so far.
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I was diagnosed with IPF in April, 2017 and started OFEV in February, 2018. 150mg twice a day for 2 years when side effects became difficult to deal with so I went down to 100mg twice a day. I had hip replacement surgery in October 2022, followed by knee replacement surgery in June, 2023. I was able to handle OFEV until 5 months ago when I was nauseous and had diarrhea that I could control with medication, but I had no quality of life. I could not eat, and lost 15 pounds and ended up in the hospital. During my hospital stay I did not take OFEV, and felt much better when I came home. I resumed OFEV and ended up back where I was, nauseous and unable to eat. My doctors took me off OFEV in September and I have been off ever since. When I stopped taking it I felt like myself again in 48 hours. I am now taking 600mg of Teavigo daily, it is found in green tea. Look it up, early research is interesting. It was suggested to me by a pulmonologist I have a great deal of respect for. I don’t think I will be able to tolerate OFEV again. But I was on it for over 5 years, and my disease progression was minimal. I am not coughing, not on oxygen and I still play golf and my life style has not changed much.
My father had PF, my brother has a mild case as does my older sister. Does it run in families, I don’t have a sold answer to that but I do know it does in mine. I will see my Dr at the end of January, and discuss all my next options. I see Drs every 3 months for PFTs and 6 minute walk.
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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 tests since starting Ofev and both have been stable. I went to Mayo in Rochester MN in the fall and they concurred that Ofev is likely the reason that the decline has stopped.
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Hi. I am thinking of starting Ofev in a few months. I just saw my pulmonologist a couple weeks ago in Rochester. My PFT’s have been fairly stable. I haven’t taken anything like CellCept. I have RA with schleroderma causing the lung issues. I am wondering how you manage the side effects of Ofev? I’m taking Actemra for my RA and there are indications that it also helps with lung issues. I just saw the article on this site about berberine. I decided to buy some and see if it will help. I see my pulmonologist in 6 months so we’ll see! Any suggestions you have would be appreciated!
Carol
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I use a prescription anti-nausea med, Ondansetron, which is very effective, and Imodium for diarrhea.
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I was diagnosed with autoimmune related lung disease in 2021. I’ve been on CellCept for a year and Ofev for 5 months. I deal with nausea and diarrhea frequently but I manage them as best I can with the hope they are doing what they’re intended to do – slow the progression of my disease. I’m scheduled to get PFTs and a CT next summer to see if these drugs have helped.
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My doctor immediately discussed the medications, I choose OFEV because of its successful track record. He explained the possible side affects and In experienced many, most of which I caused myself by not avoiding foods that I should have. OFEV is unforgiving, follow the rules and you will adjust. Learn from others experiences on the forum, I have had a smoother adjustment when I did that. Don’t prolong
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