Ofev management of side effects

[Chander]

No one tell you exactly how to reduce or get over the side effects of Ofev. I was on Ofev for more than two years taking 150mg twice a day. Then suddenly I started having loose motions. I had to stop ofev and am on pirfindone 801 for the last two years or so. My pfts are showing a steady decline but I don’t think any medicine can stop or bring some improvement in lung function after having contacted PF.

[tonybishop]

There seem to be good many medications that have side effects of some sort or other. Some minor and some worth talking with your GP about.

I too have loose motions from time to time, and stop taking OFEF for a day to allow the gut to calm down. I also seem to have developed an intolerance to Gluten, which can be a problem if the wrong food is eaten. Many foods may have wheat in minor quantities and may not always be mentioned on the lable.

A lot of this can be tolerated with care and observation to your diet I am sure.

[Elaine_Chatman]

Thanks for sharing your experience. The loose motions seem quite common, and pausing Ofev briefly sounds reasonable. You’re right about hidden gluten, it can be tricky to avoid. Tracking food triggers definitely helps manage the side effects.

[nancy-powers]

I’m 79 and diagnosed 4 years ago. On Ofev 100 mg 2x a day. I have never had diarrhea, but have experienced extreme bloating, acid reflux, and nausea enough that I have stopped and restarted the medications a few times. Through this forum, I have tried suggestions that have worked for others, but sadly did not work for me. Recently, I began taking the pills with a few gulps of high protein shake and this seems to be working. It is very thick, so I’m guessing it is protectively coating my stomach. If I do feel nauseated, I sip ginger ale or eat a ginger chew. I am able to find ginger chew candies at my local health food store. I think you just have to try whatever works for others until one of them clicks for you. I am disappointed to learn the newest medication (Jascayd) works best when taken WITH Ofev or Pirfenidone. I had hoped this would be instead of Ofev. I’m looking forward to hearing what was discussed at the Pulmonary Fibrosis Summit currently being held in Chicago (ends tomorrow).

[PattiPA]

I started 100 mgs, bid 2 months ago and have only had slight nausea rarely and some indigestion occaisionly. I seem to be able to manage all types of food and don’t necessarily need protein with Ofev. I do swim laps for an hour and alternate with 5 mile walks and perhaps that may assist in my tolerance. Don’t give up and try different things that work for you. I just started today on Dr Hall’s protocol for cold laser therapy I am excited to see how this slows progression. That being said, being physically active is most important. Good for body and mind. Best wished for your health.

[PattiPA]

PS I am 74 yes old.

[DMoffett]

I take 150mg OFEV twice daily. I did not develop any bad side effects for 2 years, after that I had a lot of GI Problems. I learned that OFEV digests slowly and problems are minimized with protein, so I eat protein 3oz chicken before I take it and then I eat protein every 3.5 hours throughout the day. I take fiber daily (Metamucil) and at bedtime I take 2 anti diarrhea pills to give me a restful night. I also have been involved in two clinical trials, and regardless of what the doctors say space the trial drugs 2 hours away from OFEV. Good Luck

[Charlene]

Hi Everyone,

The management of OFEV side effects is a popular topic of discussion on our forums and for good reasons – they can be really hard to manage! I am on OFEV at 150 mg/day as well, but had to essentially go off and back on it multiple times, titrating down to 100 mg to test my tolerance before I could manage this dose. I also wanted to share something that was a game changer for me, as recommended by my mom who is a pharmacist…. Sublingual Imodium! I tried regular Imodium and it just wasn’t enough for me to manage the side effects but for whatever reason the sublingual dose was! It was effective in managing the side effects but also was convenient to take anywhere because it dissolves on my tongue. If you try it, let me know if it works for, I never leave home without it!

Charlene.

[kosh]

Yes I as well am Ofev problematic

I am thinking of reducing it to one pill month ?????

[Samuel Kirton]

GI issues are common during this journey. Pre-transplant issues with OFEV seem very common. Post-transplant, the medication combinations may also cause GI issues. What Charlene wrote resonated with me. When GI issues impact your quality of life, please make sure your care team is aware of how it is impacting your quality of life. They know the side effects of the medications. What they do not know, unless you tell them, is how it impacts your day-to-day life. My GI team recommended that I take 1/2 of an Imodium tablet each morning as a prophylactic measure. It works for me.

[TennKin]

I was diagnosed with IPF/ILD in April 2023. My DLCO has been in decline since from 77% to now 60%. Lung volume is hanging in there but slightly reduced. My Pulm has me on 100mg of OFEV. Should be here Monday and I plan to start it Wednesday as its a day off work for me.

Just thinking about it scares me. I’m in the quality of life camp vs quantity. I do not plan to go through a lung transplant even though my Pulm say’s I will be a candidate. But I will ‘try’ the OFEV in hopes I can escape most of the nasty side effects. If it proves to much, I will stop taking it. The Dr. tried to get me on JASCAYD but my insurance wouldn’t approve it as I needed to try OFEV first.

Thanks for all who have previously shared their OFEV experiences here and in other threads.