June 7, 2019 at 7:23 am #19697Meral temelParticipant
Hi dear friends,
I just joined group. My mom has been diagnosed by ifp 2 years ago. She is using ofev now for 1 year but she has a lot of nausea problem. She cant eat . She lost 20 kilos and more.
Her doctors could find solution to her nausea problem. They said it is side effect of ofev. Can you pleyou share with me how you handle it?. Do you experience nausea side effect as well ? .
Her life became so uncomfortable
She is taking nausea medicine. But that and other side effect of ofev causes diarrhea.
She does not want to go out of house for many months because of these.
Please help us if you can with sharing your methods
Thank you so much
June 7, 2019 at 9:11 am #19702Marsha NicholsParticipant
I had same problem with vomiting and feeling nauseous all day. I decided I couldn’t live like that. With my doctor, I went to one dose a day after dinner. I am on 150 mg. This works for me. My drug company suggested 2 doses a day of 100 mg. I am unable to take it in the morning so stick to the evening dose. After 1 year, my doctor says I am nearly the same in the progress of the fibrosis.
June 7, 2019 at 9:30 am #19703Jan RicheParticipant
Meral ( @meraltemel ), I too had such serious side effects that I decided that my quality of life was more important than slowing down the progression of the disease. I stopped taking it. My doctor changed me to Esbriet. I don’t have any side effects from this medication. It is supposed to do the same thing.
I hope that is a possibility for you. Maybe your Mom should check this with her doctor. Unfortunately my progression may be slower but it is noticeable. I don’t know if the Ofev would have worked better, but I couldn’t live that way.
We did try a lower dose but the side effects did not change.
I hope your Mom finds a solution. Good luck.
- This reply was modified 2 years, 5 months ago by Charlene Marshall. Reason: tagging
June 7, 2019 at 11:03 am #19699Michael PanagiotopoulosParticipant
Hello Meral ( @meraltemel )
I’m sorry your Mother is so troubled with Ofev nausea.
It’s precisely because of this side effect that my pulmonologist proposed, and I have opted, to go for Esbriet (Pirfenidone) which is sort of milder regarding nausea. Of course there are many other drawbacks like skin sensitivity to sunlight (UV radiation) etc. Have a look here https://www.drugs.com/esbriet.html
Why don’t you talk to your doctor about it? It is also very important to take the medication on a full stomach after meals.
June 7, 2019 at 11:07 am #19717Cheryl BucyParticipant
Unfortunately we must all suffer from the effects of Ofev. I have been on it since September 2016 and I suffer from nausea and diarrhea. I have found that ginger ale helps quite a bit and also I found a tea that is made by Twinings. It is Lemon and Ginger. These are readily available at all grocery stores. I also found a product at GNC called Ginger Candy that I can carry with me when I go out and it really relieves the symptoms of nausea. I guess the common theme here is the ginger. It really helps me.
I hope this helps you too.
June 11, 2019 at 2:09 pm #19792PegParticipant
I have been taking OFEV for 18 months now and had all of the awful side effects too. Lost a lot of weight and diarrhea, vomiting and nausea. I put up with it until a month ago and asked my doctor to change me to the 100 mg pills. What a difference. I feel so much better, have gained some weight back and no diarrhea or vomiting. I still sometimes get a little nausea, but usually because I need to eat something. I find that if I keep something in my stomach all the time that seems to help. A hard candy will help in a pinch to take it away. Hope this helps.
June 13, 2019 at 8:23 pm #19832
This definitely is helpful – thanks for sharing! Unfortunately many of us on Ofev have experienced the awful side effects you mentioned, so any solutions that people have discovered are most welcome! Glad the 100mg pills are making a difference for you too, that is wonderful news! Thanks for sharing your experience, and wishing you the very best.
June 14, 2019 at 11:25 am #19843Lorena McManusParticipant
There are medications to counteract the side effects the side effects of antifibrotic medications and I’m not sure why doctors aren’t prescribing them. Some examples are Imodium for diarhhea and Zofran for nausea and vomiting. Please ask your physician about them as other folks have had success.
June 15, 2019 at 12:29 pm #19855
Thanks Lorena, hopefully doctors are able to prescribe them as requested 🙂
June 15, 2019 at 11:18 pm #19864Malcolm MannParticipant
I to had similar problems with 150mg Ofev twice a day, I was not tolerating it at all. My doctors gave me a 2 week holiday then 150mg once a day till I got back up to see them, and now for the last month I’ve been on 100 mg twice a day.
I’m tolerating the 100mg dose very well only very slight discomfort ( & emergencys).
June 18, 2019 at 2:08 pm #19917Anne PhilibenParticipant
I have problem with dry heaves. Have had to discontinue both Esbriet (GERD) and OFEV (diarrhea) and now rely on Mucinex for cough. Dry heaves after some meds are a real problem.
June 18, 2019 at 7:01 pm #19934
Hi @anphlbn, Anne,
So nice to hear from you, although so sorry to hear about the horrible dry heaves you’ve been experiencing! That is just awful news. Do you find the Mucinex for the cough is helping? I know folks are always interested in learning more about what helps reduce the cough and there have been a few helpful solutions shared on this site. Its not possible to take the Mucinex with either of the anti-fibrotics? I’m sure your doctor would have considered this, and I’m sorry to hear of the tough side effects associated with each one. Hang in there, and feel free to write anytime.
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