May 1, 2018 at 9:09 pm #12192Pulmonary Fibrosis News ModeratorParticipant
Ofev slows down the progression of IPF by blocking tyrosine kinase enzymes which contribute to collagen growth. Slowing collagen growth leads to less fibrosis in the lungs and a longer life expectancy. Ofev has also been found to reduce the risk of serious flare-ups in IPF patients.
Here are some other important things to know about Ofev: “What You Need to Know About Ofev”
Are you on Ofev? Share your experience with us.
May 7, 2018 at 6:21 am #12357Ken RoomParticipant
I have been diagnosed with IPF for three years or so. Have been on Ofev for just over two years. Have heard “advanced” mentioned. I have been in hospital for the past two weeks with jaundice. During this time I have not been given any of my usual medication, including Ofev. I normally take two capsules a day. I have not noticed any change in my condition but am wondering how this will affect me.
May 7, 2018 at 7:19 am #12360
Thanks for your contribution to this thread – it is nice to have another patient on our forums who is using OFEV for the management of their disease. Welcome!
So sorry to hear of your hospitalization for jaundice, what a bummer that is! Do they have any idea what the jaundice is caused from? This may sound like a silly question, although I know there are a few different causes of jaundice, some of which can be attributed to medication changes, so just curious. Does your PF specialist / pulmonary physician work out of the hospital and/or, has the nurses and docs at the hospital been in touch with your doctor? Unless they suspect the OFEV is causing the jaundice, I have a hard time understanding why they stopped your OFEV. That being said, I am not a doctor so don’t want to question their actions, although I would hate for this to effect your lungs, having two weeks without your anti-fibrotic medications when you’re used to them. Usually when I am in hospital, they get in touch with my primary lung specialist to confirm/seek out what information I should remain on and they work from there.
How being off the OFEV might affect you is a good question to ask your treating physician at the hospital. Goodluck and hope you’re able to feel better soon!
May 7, 2018 at 2:27 pm #12369Ken RoomParticipant
Thank you for your prompt and courteous reply. Just to keep track I’m in London. For the first few days I was given an ECG, X-Ray, CT scan, MRI scan, and finally an ultra sound scan. Until the US scan nothing was seen and the doctors were thinking that Ofev might be the cause. I’m in a local hospital but my IPF consultant is in Guys Hospital in south London. Liaison Between the two has been ongoing throughout. Not finding a physical cause Ofev was becoming the main suspect until a small stone was seen in my bile duct. Also something inside of me is apparently in the wrong place. I think gall bladder was mentioned. I have resumed taking Ofev. Strangely enough my blood pressure has remained constant during this time and my daily Lasartan pill has been discontinued. I’m now due for an endoscopy tomorrow to locate and remove the stone and, I suppose, to resite whatever to its correct position.
I tried on numerous occasions to ascertain the situation re. Ofev but it would seem that patient/doctor communication in Canada is better. I’m due a lung function test and consultation on 22nd May. Hopefully I’ll learn more then. Apologies for the delay in replying but my one finger typing is not the best
May 7, 2018 at 7:43 pm #12371
My pleasure – thanks for connecting back!
Are you in London, UK? If so, I am planning a trip there in September pending my health stays status quo and cannot wait!
Glad to hear that consultation with your IPF specialist and current medical team has been ongoing, this is good news so that both teams can work together to treat you most effectively. I remember all those diagnostic tests well, and hope they weren’t too tiring on you. Glad to hear also that it isn’t the OFEV causing the issues, especially if you find it has been helpful for you, although sorry to hear about the stone and gallbladder. I hope tomorrow goes well for you, I’ll be thinking of you. Do you know if you will have a long admission after this procedure is done tomorrow? Hopefully you’re enough on the mend and can be discharged home.
No worries re: any delay in replying, please take care of you and I hope everything goes well tomorrow.
January 27, 2019 at 9:05 am #16275ThomParticipant
My name is Thom. But for now call me confused. I went to Yale medical center and was prescribed ofev
I’ve had the med two weeks but was advised by my local treating doctor not to take it yet
I’m not sure why
So who do I listen to! Reply here or to me. I’m ok either way. [email protected]
Thanks for listening!
January 27, 2019 at 9:19 am #16288
Thanks for connecting and sharing your thoughts on this topic thread. That said, I can only imagine how confusing it is to have a specialist prescribe you OFEV, then to have your local doc say not to take it. What was your doctor’s rationale for advising you not to take it? I think I’d need to understand more about that, since OFEV is only 1 of 2 drugs approved to slow down the progression of IPF. Was the physician at Yale a pulmonologist / specialist for interstitial lung diseases? If so, I’d be more inclined to take it and follow his/her advice but certainly I’d be curious about finding out why your doctor doesn’t think its a good idea.
Not sure if this helps? Please do keep us posted on what you find out and how you proceed.
Talk to you soon,
September 17, 2019 at 11:48 am #21331
This is my first post. I initially tried Esbriet but it made me nauseous. I started on OFEV at 300 mg/day. I told my doctor about the diarrhea. He suggested that I try 200mg/day
That didn’t either, but I toughed it out. After losing 65lbs due to the diarrhea my doctor told me to stop it.
The 2 years I was taking OFEV my condition was stable. I’m just waiting on an appointment to be set up for a PFT to see if there has been any changes.
September 17, 2019 at 12:22 pm #21332
Hello Janette, thank you for commenting on your experience with Ofev. I hope your condition is stable especially after your grueling experience. Thank you, Mark.
September 17, 2019 at 7:27 pm #21337
Thank you. I’ll be sure to check back in and update my results. The hardest part of this disease is that, so far, I feel fine
I get out of breath faster than I used to and can’t walk like I used to.
September 19, 2019 at 10:29 am #21355Jane McBrideParticipant
Like you Ofev seems to have stabilized the progression of my IPF, lovely to hear. However, I too had difficulty with the intestinal side effects on the 300mg a day. Not as badly as you but badly enough to plan my life around whether or not I could plan to go out with friends etc. My doctor changed the dosage to 200 mg per day and so far it has been very much easier to control the side effects.
You may wish to try 200mg after taking a break from Ofev for a month or two if you are no longer stable. I took a break of about three weeks after discontinuing 300 mg. for a really bad cold (not quite a flare) and found returning to the Ofev at 200mg much easier to deal with.
Also, I found selective diet helped. I keep salads to a minimum and vegetables in small doses. Carbs and proteins seem to help keep the diarrhea to a minimum. No problem for me as steak and potatoes are a favorite.
I will be tested for results at the end of the year, after 5 months on the 200mg. I pray your results will be good ones, Janette.
- This reply was modified 1 year, 4 months ago by Charlene Marshall. Reason: tagging
September 26, 2019 at 9:14 am #21434John KaneParticipant
Charlene, I am about to start Ofev. Where can I find actual studies/stats on the success for this drug. I watched the manufacturers video, but that is their spin. Thanks, John
September 26, 2019 at 2:35 pm #21439
Hello John, here is an article written by a staff member at pulmonary fibrosis news. https://pulmonaryfibrosisnews.com/2018/11/02/ofev-benefits-less-for-severe-ipf-patients-than-mild-to-moderate-patients/
its an independent paper. You can also do a google search of the benefits of ofev. You will just have to sift through the ofev manufacturer papers. Thank you, mark.
September 26, 2019 at 9:35 am #21435
I read somewhere that taking a steroid with OFEV will prevent the diarrhea. Has anyone else heard about this?
November 3, 2019 at 4:08 pm #21838Tom PrattParticipant
Hi @janette I was diagnosed with pulmonary fibrosis in May of 2015 and all that was offered to me was 20 mg Prednisone to suppress my immune system and hopefully slow the progression . I was referred to Duke in June of 2017 and tried to get into the trial for Ofev, but was turned down. I have recently started Ofev and have experienced none of the side effects reported by others. I was also on Metformin and started taking Gabapentin about 3 months ago and noticed my cough got much better. These drugs have been noted in this forum to reduce the diarrhea and cough. I currently take 8 mg Prednisone and 1200 mg Gabapentin. All I can tell you is that it’s a relatively cheap experiment to try and see if they help you.
- This reply was modified 1 year, 2 months ago by Charlene Marshall. Reason: tagging
September 26, 2019 at 2:30 pm #21438
Hello Janette, I have not heard of this but I am not saying it couldn’t be true. I do know doctors avoid prescribing prednisone to persons affected with ipf but they will prescribe to patients with a known cause of pulmonary fibrosis as these patients tend to experience inflammation in the lungs. They will usually pair the prednisone with cellcept. If you find out anything about your question please let us know. Thank you, mark
September 26, 2019 at 2:59 pm #21441
The next time I see my pulmonologist I’ll ask him. It won’t be for a couple of months. Maybe I’ll call his office on Tuesday and ask his nurse to ask him. I’ll keep you posted.
September 27, 2019 at 9:38 am #21446
Thanks for your comments and replies to this topic! Sorry for the delay in getting back to you, I am currently on vacation in Hawaii but wanted to provide you with a solution for OFEV that works well for me. Someone recommended immodium to help with the GI-related issues that come from this medication, and I was convinced my body didn’t absorb it because oral immodium did nothing for me. Then my Mom (who is a pharmacist) suggested the sublingual tablet (under the tongue) for a different type of absorption. It works like a charm for me! It is faster to swallow too because it just dissolves and it is very quick-acting. A little more expensive, but maybe worth giving it a try?
September 27, 2019 at 10:05 am #21447
I took so much imodium. I gave up coffee, dairy, any fatty foods. I was also told to avoid fiber. I didn’t drink coffee gir do long that now one cup and I get the jitters….lol.
I can drink decaf coffee though.
Thanks for information about sublingual tablet. I all my pulmonologist next time I talk to him
I’m going to call him on Tuesday because o heard that prednisone might help with the GI problem. Wish me luck.
PS enjoy your vacation
September 27, 2019 at 10:08 am #21449
I find the difference of administration types – sublingual vs. oral – makes a huge difference in its effectiveness but I can understand you may not want to try it based on your previous experience. Keep me posted on how you’re doing, and thank you for the kind words about my vacation 🙂
September 27, 2019 at 10:23 am #21454
Thank you for your quick reply. I will keep you posted. Maybe I’ll ask my pharmacist today about the sublingual imodium.
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