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Ofev and abdominal pain
About a year ago my pulmonologist put me on Ofev with the usual ramp up to the full dose. Not long after reaching the full dose, I started experiencing severe, abdominal pain that was completely debilitating, but not quite enough to require me to go to the ER and no blood. The first bout lasted a day others would last as much as 3 days even preventing me from sleeping at night. All together there were 3 or 4 events in the first 3 or 4 months I was on this drug. My doctor reduced the dosage which helped and switched me to Perfenidone after 6 months. The Ofev appeared to reduce the inflammation and even the fibrosis as seen in a HDCT scan and breathing function tests. I was able to walk 6 minutes without O2 and not have my levels drop below 90% saturation. Unfortunately, the Perfenidone has not worked as well and I may need to return to the Ofev. My question is has anyone experienced such severe pain? Did the events go away over time? Are there any suggestions? Thank you for any information you may have.
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14 Replies
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Hi,
It’s strange that you raise this as an Issue as I’m suffering from abdominal pain just lately, but never considered OFEV as the possible cause. I have been referred by my GP to a laxative as he suggests that my pain could be constipation.
I have taken his recommended medication abdominal it provides relief for some time, but the pain eventually comes back.
Anybody out there who can advise/ help?
Thanks
Keith
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Constipation and diarrhea are both published side effect of Ofev an Pirfenidone for which I take Miralax and Metamucil daily to control, but the pain when on Ofev was as bad as any diverticulitis attack that I have experienced.
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I have been on Ofev for 4 years now. My first pulmonologist was insistent I ramp up to the 150 mg after a few months but I could not tolerate it. I had the symptoms you are describing. Sometimes I’d wake up feeling like I had a stomach flu. My new physician at the U of MN said that I did not need the 150 …it is too much for a small person ( I am 5′ tall 130 lbs) to tolerate and it may be too much for other people for different reasons. She has many patients on the lower dose and says that their PFT results show that they are just as well off on it as they would be on 150. ..without all the horrible abdominal side effects. I still have to be careful what I eat and I do take plenty of fiber supplements, but I feel a heck of a lot more normal than when I tried the 150. So that would be my suggestion…ask your doctor if you can go back to 100 mg and see how your tests do. Oh, and make sure your stomach does not get too empty …if you need a cracker in the middle of the night, then so be it, it helps protect your stomach from the meds.
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I have had two pulmonologists and my PCP both tell me that the problems the two drugs cause, especially with people (like me) that have IBS or other gastro issues, far outweigh the good that the two drugs do for IPF. It is such a small percentage. I did great for 7 years with IPF until my exacerbation almost three years ago . Now I am on 6LPM of oxygen. Before that my doctor would always say that if I had been on Pirfenidone or Ofev, that bells and whistles would go off because it was doing such a good job of me maintaining good numbers. When, in reality, it was just me with no drugs. Sometimes it’s just not worth the pain or inconvenience of taking the drugs. It’s your choice and either one is a good one. I am currently on a clinical trial, Fibroneer, and have been on a couple of others. I hope one of these new ones shows better results !!
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I also have IPF, diagnosed about 18 months ago. Did Ofev 100mg for 6 months no issues. Changed to the higher dose (150 every 12 hours ) and was having upset stomach at first , then I started taking it with a small serving of grits this was doing the job. I maintain an excellent diet also. Then about 3-4 months ago the abdominal cramps started again. Along with that my bowel movements have become non-regular to say the least. I also have been told that the Olfev benefits far outweigh the side effects. I also would be interested in suggestions on what has helped others with these abdominal / intestinal issues.
Thanks in advance.
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When I was on Ofev, it was 100mg tablets, As I recall 3x a day with the prescribed ramp-up. I have suffered for years with diverticulitis and had a colectomy that removed 8” of my colon 2 years ago. I currently have no symptoms of diverticula disease, but may be more sensitive. I have read that abdominal pain is a side effect of Ofev and in severe cases can result in intestinal perforation.
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Hi Julian,
I take 100 mg twice a day and was having similar issues. Now I take the pills with a protein drink which has eliminated the issue. I use the Premier brand and take at least one half container with each pill.
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Thanks! Good to know! I was on a low carb diet and found after being switched to Perfinidone increasing my carb intake helped with some of the side effects, like dizziness.
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I have been taking OFEV for about 2 years. Here is what I have found that works for me.
1. Do not take OFEV without taking Imodium. Best to take Imodium combined with Simethicone. Available at Walgreens. The amount you take depends upon your system and what else is going on in your life. I generally take a half of a table at the time I take OFEV or sometimes 30 minutes before I take OFEV; however if my stomach has been rumbly I will take 3/4 of a tablet or a whole one.
2. Always carry 2 Imodium tables with you and do not hesitate to take at the very first sign of diarrhea or excess gas.
3. Anytime you have excess gas it means you need to increase the amount of Imodium you are taking.
4. Imodium is constipating so I eat a bowl of oatmeal every day. Also eat fruits, greens, and vegetables.
5. Cut back on all milk products.
Good Luck
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Again, good info. Thanks!
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I’ve been on Ofev for one year, originally on the 150 mg tablets twice a day. I found it hard to tolerate at that level with the stomach pain and diarrhea. A few months ago, my doctor switched me to the 100 mg tablets twice a day, which I’ve handled fine. I rarely get diarrhea b/c I eat a low-fiber diet, but I have up to 4 BMs a day. I always take the med no less than 12 hours apart and always with some kind of fat and protein.
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Hi; about three yrs ago my dr introduced me to ofev at 150mg twice a day! For the first couple of days i were fine then i began to experience unbearable amount of pain not to mention the diarrhea i was having! I was having diarrhea several times aday that it actually messed up my bottom. The dr changed my dosage to 100mg one time a day. Then just last month toward the end he put me on 100mg twice a day! I am doing fine on this regimen after he ramp up the dosage no pain and no diarrhea glory be to God!
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Viola
Julian I too had trouble with abdominal pain and diarrhea after starting Ofev. My pulmonologist told me to take the Ofev without any other of my medications,after one half hour take peanut butter and toast which has seemed to help very much. I take Imodium at the first feeling of cramps and that helps too. Hopes this helps you!
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Thanks to all who offered suggestions. I try them if I need to go back on Ofev.
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