Kathy Whitehead
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Diagnosed in 2016 I had no symptoms until after I got Covid in 2021 then I started having some issues and I’ve been on Ofev for two years now. Could not tolerate the 150 mg it affected my liver not to mention the diarrhea.. the 100 mg seems to be doing fine for me still having some diarrhea issues but using Imodium every day. Just had a CAT scan and in one year I have had a little progressions not much. My mother died of pulmonary fibrosis in 2007. Nothing was available to help then. She’d had it for nine years from her diagnosis before her passing. It is definitely hereditary because now my younger brother has it also, he was diagnosed one year ago so at about the same age I was 66. I am 73 now, active healthy, somewhat breathless when I over exert and I tire more easily for sure. Bathroom time is a lot more frequent but other than that I am enjoying my family helping at my church and traveling. I do have oxygen provided through my doctor but I have not had to use it. Apparently if I go below 88 I’m supposed to use it. I think, as Steve said above staying active is so important and you can never underestimate the power of a positive attitude and prayer. I have three grandsons on missions for our church (LDS) right now and I plan to be here in two years when they return and then see all my other grandson‘s fulfill missions, and maybe even some of my granddaughters! Also, looking forward to those weddings and great grandchildren! Best wishes and many prayers for all of you as we struggle through this together.
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When I first started Ofev on the 150 mg dosage, my body would not tolerate it. My liver numbers went sky high after only being on it about a month and a half so they stopped me on it and then three months later I tried again, and had the same results. In October 1922 I started on the 100 mg and except for the diarrhea (which is no fun ) I have no side effects on that and my liver numbers have stayed normal. I would suggest going down to the 100 mg it seems to be working just fine. I would at least try it for a while and then maybe try to go back on the 150 mg.
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That would be 2022 🤣😂
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I was diagnosed with IPF in 2016 and like Keith Emery all was well during the ensuing years. In January of 2021 I contracted Covid 19 and was seriously ill for about a month with one trip to emergency. This totally flared up my IPF, I was prescribed Ofev 150mg in October of that year. I had all the side effects listed above plus my liver numbers went sky high! My Doctor took me off Ofev for 3 months and we tried again ……… same experience all over again. Went off again for 3 months and then started on 100mg, bingo! No more severe side effects just the diarrhea and my liver is fine now. I take an anti-diarrhea pill every morning and it seems to help, but it is a constant problem, I have quit dairy and caffeine and that does seem to help. Sometimes I go off ofev for a day or so and it seems to help. My IPF has not gotten any worse and I have not had to go on oxygen at all. I do have trouble with being breathless at times (stairs, hills, exercise classes). But at 72 I think I’m doing pretty well!
My mother died from IPF in 2007 (before OFEV) we asked our doctors if it was inherited and they all said no. HA HA not so! There are 6 of us siblings and I (the oldest) have it and last year my brother (8 years my jr) was diagnosed with it. So we are both on Ofev now and living a full life with mild limitations. I think my mother had it for several years before being diagnosed in 1998 after fainting at my sisters in SLC (5,000 ft. elevation not good). They tried prednisone which made her get fat and I think made her worse, then she went on Oxygen and could hardly get up out of bed by 2001. Then we heard about Interferon Gamma 1B, It was a miracle drug but she had to give herself shots every day. For 3 years she felt better, not perfect but better and less oxygen was required. She was even able to make it to 3 of my kids weddings. Unfortunately it stopped working, which happened with everyone who was on it for IPF, but she had 3 good years because of it. Her last 1 and a half years were totally spent in bed but she was able to talk with us give advice, write more poems (her passion) and see several more grandchildren added to the family!
Needless to say all of my other siblings ran to their doctors to get tested and so far it’s only my brother and I affected out of the 6 of us. I worry about my 5 kids now and my 16 grandchildren (not to mention my 60 some nieces, nephews and great-nieces and great-nephews) but I am confident a cure is coming!! I’m praying for it every night for all of us!!
Good luck to you all, we live in an amazing age of medicine! Never give up!! I’m continuing to take ofev dealing with the diarrhea and waiting for the cure!!! It’s coming!!