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I started Ofev in January 2023, after having an open lung biopsy, and I only took the medicine for 3 days when I started getting really high blood pressure and I was really dizzy to the point of almost vomiting. I called my doctor and he said to stop it and see what happens. Well I haven’t taken it since then and it is now March 2023. My doctor asked me to start taking it again and see what happens, but I am very skeptical about taking it. I am still working as a teacher and I cannot work with those symptoms. Has this happened to anyone else? If I keep taking it will the symptoms go away eventually? My pulmonologist can’t answer these questions, so I am asking for opinions from people who have been taking Ofev for a while. I am retiring this coming May and I hope I can concentrate more on my health and taking care of myself. Any insight would be appreciated!
Maria (Tina) Donihoo
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Hi Maria, I too started Ofev in January 2023, now into week 10. I have nausea and vomiting together with Diarrhoea several times each week and lots of wind/gas. My Consultant Pharmacist assures me that through time this will pass. I am determined to stay with the drug as its benefits outweigh the drawbacks i.e. slowing of the progress of the fibrosis which lengthens my life span, albeit for a few years – the alternative is worse, in my opinion. Persevere Maria, best wishes.
Keith -
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I want to share what I have been doing since on OFEV last Nov… I too was not tolerating OFEV at 150mgs..I tried until Feb. then my doctor changed my dosage to 100mgs much better, but this is a must: (for me anyway) try to get between 20 and 30 grams of protein each time you take it… I take a 1/2 pure protein shake (15g of protein) and a 1/2 of an Elevation protein bar (5g) most each day, If I have a protein pack dinner I take it then. Seems to help with cramping, diarrhea have not had vomiting since first couple of weeks on 150mgs. In November…
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Hi Maria. I had an open lung biopsy in 9/2018 and started OFEV soon after pathology came back IPF. I had intermittent diarrhea (still do) and nausea. For the past two years I chase the OFEV 150mg (2x a day) with Zofran 8mg. By accident a week ago I neglected to take the Zofran and two hours later I was quite nauseous so it likely does not fully go away. I have not had ⬆️BP though. Maybe with starting at a lower dose (100mg) and increase if tolerated. As Ghouse states—side effects vary widely as does the disease itself from person 2 person. I will get a 2-3 period with diarrhea but it passes and is less frequent over time. I try not to take OFEV on an empty stomach. I feel strongly that as it’s one of only two APPROVED meds for IPF—one should try to use it if available & affordable. One study showed a median life expectancy of 11.6 years on an anti-fibrotic vs 3-5 years without. Don’t know the details of that study but my Pulmonologist has a patient with IPF diagnosis (not on oxygen) for 15 years. Im symptomatic for 6-7 years (diagnosed 4.5 years ago) and doing well. Maria the vomiting I suspect is a SE of the Ofev and not elevated BP but anything is possible. Again consider Zofran. There is also a SL (sublingual—under the tongue) which is also great to have as it’s effects are rapid.
Don Salzberg-
I just got OFEV Friday and so hesitant about starting. I jumped thru hoops getting it with insurance, Dr., Pharmacy now it sits. I had a bad experience with Pirfenidone so sick finally Dr. took me off. I already have a lot of GI issues due to no Colon, no Gallbladder and it has been very difficult since I had the surgery 2 years ago. I dread the thought another round of possible side effects and the Specialty Pharmacy told me all of them. I do know the alternative Diagnosed Early Stage 6 years ago last year due to Pneumonia first change.
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I am a 72 year old male active and healthy except for the IPF and I’ve been on 150 mg of Ofev 2x a day for a year now and for the first couple of months the diarrhea, nausea, gas and bloating were pretty intense. I received advice from my primary and pulmonary doctors and also from the Boehringer/Ingelheim support. Most of it was to take the pill with food and if I had a problem take some anti-diarrhea or other meds to calm my system. I was getting pretty frustrated and then I noticed the foods I usually eat were not tasting the same(were not tasting good) and my appetite was not what it use to be. Kind of knowing that my present life style was not working I decided to make some changes. And now I can say I am pretty much out of the rut of eat, pill, and then toilet. How, you say. I have completely changed the foods I eat, way more baked,steamed and fresh foods. I have gone into some stir fry which so far so good and I stay on a routine with my meals. Solid breakfast with a light lunch and then decent dinner. I read where people take Ofev on empty stomachs and that is such a no-no from everything I have read and lived. I have learned what works for me is to take the Ofev 5 or 10 minutes after I have eaten my complete breakfast or dinner. I might have a slice of pie or some fruit after I take it and maybe a cup of tea. Everybody is different and what works for one is surely not for everybody but I do think that eating foods that work with you instead of against you is a key and also taking the Ofev after you eat gives your system a chance to start the digestion before the Ofev challenges it.
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Hi Maria. First, and not trying to be negative, but there isn’t a pulmonologist that is worth their salt. A good one is as elusive as the correct spelling of the word pulmonologist. Can’t even find a correct spelling for it in a dictionary or even spellcheck. For what ever the reason they are not up on the many different things that are out there that may help us. There is Zinc also red therapy #4 (i think that is what they call it) and many others that in my decade of having this wonderful disease i have been told about. Fortunately, i have never had any obverse reactions to OFEV, however,i take 150 mg twice a day. Don’t know what amount you are taking, but if 150, it might be smart dropping to 100. I am not a doctor so you should check with your doc, although i may may know more than he does as well as the people who have answered your call for some helpful information. Hope that this gives you a path to follow. Charles “Chuck” Gerson
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Thank yo so much for your reply! This is truly a wonderful site with people who care about each other and share their experiences of what they have gone through. I will eventually try the Ofev again after I retire in May. I’m just dreading the side effects I had ( night blood pressure and dizziness). My pulmonologist actually asked the nurse how much he should start me on Ofev! Can you believe that? I feel I have to do a lot of my own research on this disease! Whatever I find in research I will share on this site!
Thank you again and God bless! -
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I took Ofev 150 xtid for 3 months and had so many gastric problems and pain; I went off it for a week and got much better; so then back on for 3 more months, same problems except now I have developed a fistula between my bladder and colon in November 2022. Up to then I had lost 40 lbs (which I needed to lose) and food was down to soup and oatmeal. They took me off Ofev immediately and since I have IPF they are tryihg to figure out a way to treat my fistula without major surgery. My pulmonologist was of no help through any of this and actually seemed surprised by my condition (hasn’t he ever read the warnings on the Ofev publications?). He wants to try Esbrite, the other pill, but I am not so sure I am willing to try another gut wrenching med. I would rather enjoy my life, diet, and not suffer through the agony that I went through before trying to extend my life span.
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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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