March 11, 2020 at 6:45 pm #23393Charlene MarshallKeymaster
A popular topic of discussion on our forums is the two FDA-approved anti-fibrotic therapies for the management idiopathic pulmonary fibrosis (IPF): Esbriet and Ofev. Both of these drugs have been proven to slow lung function decline in IPF patients, with Ofev showing that decline at 57% according to phase III of the INBUILD trial.
Recently, the FDA approves the use of OFEV for other chronic fibrosing interstitial lung diseases (ILDs) in addition to IPF. For patients who otherwise had no treatment options, this is some hopeful news. Read the formal announcement from Boehringer Ingelheim HERE.
As a patient who is on OFEV and is convinced it is helping slow the progression of IPF, I am glad others with ILDs will get a chance to see if this medication also helps them. However, I am reluctant to share this excitement with other friends who may want to try it (I have a couple of friends with pulmonary sarcoidosis or NSIP) as I know the side effects of OFEV can be difficult to adjust to.
If you’re using OFEV to slow the progression of IPF, what is one tip you’d give patients wanting to start this drug for other ILD management?
March 12, 2020 at 10:15 am #23404
I wonder what criteria will be used to determine which patients of chronic fibrosing ILD qualify for treatment with OFEV. It seems to me that the sooner therapy is started, the better. If declining lung function is the determining factor, it seems a bit arbitrary. Who decides, the clinician, or the insurance companies?
March 12, 2020 at 1:06 pm #23407Mark KoziolKeymaster
Hello Regina, the process will most likely be the same protocol that is followed for the IPF patients. The physician completes paperwork for a referral for the patient to take Ofev and then insurance company comes into play. I’m speculating but that is the way it worked for me. Take care, Mark
March 12, 2020 at 8:40 pm #23410Dan HughesParticipant
MyDr started me on Ofev before it was approved for Scleroderma.
I am on my 8th month of Ofev, I would recommend to anyone prescribed this drug to eat a big, high protein meal prior to taking Ofev, or diarrhea is almost guaranteed.
the only other notable side effect is weight loss, I’m not sure if it’s the drug or my lung condition causing it, my appetite for food in the last few months has really fallen off.
March 14, 2020 at 11:45 am #23426Charlene MarshallKeymaster
Thanks so much for writing and sharing your experience with Ofev, and I hope it is proving to be helpful for you. I am also on this drug and completely agree with your suggestion to eat a big meal with protein prior to taking it. I’ve heard others tolerating it with smaller meals throughout the day as well, but again high protein. Thanks for sharing what works for you, and I really hope the appetite is curbed and becomes strong again. Thinking of you!
March 14, 2020 at 12:13 pm #23432
Thanks for your input, Dan.
Did you discover that high protein meals helped with side effects after trial and error? I’m wondering if a ketogenic meal would have the same benefit. Extremely low carb, moderate protein, but high fat. I do not tolerate large meals well so I eat very calorie dense portions a couple of times a day. It also sometimes takes hours for my stomach to empty, so frequent meals are not good for me. I want to be have a plan in case I am prescribed OFEV. I appreciate the wisdom shared here on this forum.
March 14, 2020 at 12:45 pm #23433Mark KoziolKeymaster
Hello Regina, from my experience I ate 5-6 small meals per day. My plate always had a protein and a carb. I also found eating a banana before I took my my morning dosage alleviated gastric problems. As far as keto goes check with your doctor first. Keto has an influence on your kidneys and I don’t know what other meds you are on. As a transplant patient I can tell you first hand, healthy kidneys are a wonderful commodity to have and I would never do anything to compromise them. I think trial and error would be a great starting point. You know your body best and all patients have their own experience with Ofev. Take care, mark.
March 14, 2020 at 1:30 pm #23435
Thanks for sharing , Mark. I’ll definitely have the discussion with the doctor about diet when and if Ofev is prescribed. I was merely curious to know if anyone else has experience with this way of eating while taking the antifibrotic.
I’ve been eating a ketogenic diet for a couple of years now and my kidney function is actually better and more stable than it was previously. It has helped to radically reduce inflammation for me. Nevertheless, I agree that part of due diligence includes talking to your doctor about diet and weight management. At the very least, to apprise them of your choices. It would not do at all to have your physician panic over slightly elevated ketone levels and assume that you are headed toward diabetic ketoacidosis. That condition is very, very different from nutritional ketosis and is extremely serious.
All the best to you.
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