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I read everyone’s replies in this thread. And since I am an IP patient and take Ofev, my opinion is not much different.
One hesitation that I have in recommending Ofev is the price and coverage. Here in the good ol USA, price and copay can range quite a bit. I’m on Medicare and due to my limited income, qualify for a scholarship to pay the exorbitant copay. Otherwise, I would not be able to pay the copay. Price for Ofev and Esbriet are extremely high in the USA compared to the rest of the world. So, first off, my advice would be to check on the affordablity.
Second, the ability to tolerate either medication is important. I take the 100mg Ofev, twice a day. I started out on the 150 and after 8 months, severe weight loss, nausea, muscle tears, headaches, dizziness, and spontaneous bleeding, I finally had enough and asked to get it reduced to 100mg. I still have some issues from time to time, but am able to tolerate it much better. In retrospect, it might have been better to start on 100mg, then increase it to 1 100mg and 1 150mg per day and then to a full dose. That way it might have been easier instead of the trauma I endured from the get go.
One important thing to note is food. I have found that some foods will trigger nausea, diarrhea more than others. One should not be alarmed if you suddenly start having diarrhea or constipation. They are side effects not so much to the mediaction, but the interaction of the medication and certain foods. Learn which foods trigger them and then make substitutions.
Also, don’t get your hopes up that antifibrotic medications will be a cure all or even a cure. At best, they are only going to help, I repeat, help you to live a longer life and with a better quality. The rest is up to you. Stay active. Don’t dwell on the what if’s, but do dwell on the what can’s…what can I do today?…what can I enjoy today?…can I travel to see…? can i go and do…?
I will take a moment to do some bragging. I was diagnosed 10 years ago. I was a participant in Fibrogen’s drug trial for phase 2 and received it for 3 years before they ended the open label leaving me without treatment. It was at that time I started Ofev. That has been treacherous at times. I recently completed another drug trial and will be starting the open label. I am still on Ofev.
While my quality of life is not quite what it was 10 years ago, I am still not using supplmental oxygen. In the last ten years, we have travelled by motorcycle from coast to coast, by RV from Canada to Mexico, and several other states in between. We have rebuilt not one but two homes on our own. Gardening, yard work, landscaping, mixing and pouring concrete, building decks, garages, sheds, etc has been my way of staying active. As well as walking and everyday normal activity. So, yes, IP is bad, but it is not the end of life. Start the drug….and keep in mind that life is not how many breaths we take but how many moments that are breathtaking…..