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Anyone have experience with OFEV meditation for ILD?
I was diagnosed three years ago with ILD, interstitial lung disease. My pulmonologist at the time only prescribed an inhaler. Now, three years later, after my 4th bout with Covid, I’m working with a new specialist, to be aggressive with treatment. The shortness of breath is appalling, as I have been active my entire life, working out three days a week. Now I simply can’t. I’ve been prescribed OFEV, and I’ve been told the intestinal and stomach issues are horrible. Anyone have any experience with this? I would love to hear from you. Thank you very much!
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What is OFEV??????????????
It’s a new capsule medication for lung diseases that cause scar tissue in the lungs. It has been successful in slowing the decline in lung function. It has some awful side effects: vomiting, nausea, stomach, pain, headache, weight, loss, increased blood pressure, liver issues and diarrhea. Gee, could there be anything more?
I guess I’m willing to try it, but I’m not hopeful that I can adapt.
Is this new specialist a Pulmonologist as well. Just reading briefly about it, it does look scary. Might you need a second opinion or make an appt with a large medical center ie Mayo, Cleveland Clinic, John Hopkins to reassure you
Yes, his specialty is ILD, but you bring up an interesting point. I saw another pulmonologist first, and I may give him a call and ask if he believes I should. The first month is $13;000: My plan covers $12. They have foundations one can apply to help with the cost.
I spoke with the specialty pharmacy and there are just two drugs for treating ILD. OFEV is one pill twice a day. the other is 12 pills a day!!
If the Pulmo that recommended starting on OFEV has other patients on it perhaps he knows one of them will enough to ask them to call you ad share your experience with it. How much is the 12 pills/day? $13,000/month is crazy! Does the Pharma offer any assistance for their drug and who manufactures it?
Yes! My doctor just mailed me information about foundations that offer financial support. The first month is $13,000 and my co-pay is $1000. The OFEV is 2 pills a day, not 12- thank goodness!
I hate the fact that I have to plan my day, understanding that when I take the pill in the morning, I probably will be very sick. 😩 I suppose The alternative is worse. 😊
kdalda75 makes a good point about second opinion with a pulmonologist with a subspecialty in your disease. I have both lung cancer and pulmonary fibrosis. My first Pulmonologist whose subspecialty is lung cancer sent me to his colleague who specializes in Interstitial Disease for a consult to see if I should be prescribed an antifibrotic (Olev or Esbriet) for my pulmonary fibrosis and dropping lung function test values after radiation treatment. After looking at my records, the colleague thought I might have stabilized and put me on oxygen instead. I have stayed stable for a year now so have not needed an antifibrotic. I have my lung functions tested regularly to stay on top of things.