Dear @ead
Hope that your illness has been diagnosed early ❤️
My husband has been taking it for almost three years now. His illness was diagnosed early, because of a stomach issue and an xray, by his gp; he is holding steady.
We also had huge concerns about the side effects. And long discussions about the cost. That was before the $2,000 med cap per year came into effect. At that time we paid $700 a month.
As to side effects, everyone is different.
In preparation, I changed our diet to be bland and simple. No raw vegetables/fruits, etc and started small meals. Nothing spicy/greasy. After a while, I added stuff in slowly. He is doing great! Easy to add foods instead of taking away.
Also he wears only dark shorts and pants when golfing in case there is an issue. All good.
He is 78, and likes to take more naps than he used to, but hey? Not sure if that is a side effect of age…🤪
About a year after he started Ofev, he had a mild stroke and was convinced that it was the medication. After every test in the world, there was no found cause. Again, we had some serious discussions about returning to the medicine.
(He was ill and had several immunity injections during that time; all doctors felt that was the cause, and now only has a flu vaccine)
One of his doctors explained the serious results of not taking the medication, since once you lose lung function, you can not get it back. He has now been taking it for 2 years. And doing great! Diarrhea and stroke issues were our biggest concerns.
I hope that your pulmonologist has gone over this stuff to your satisfaction!
Please ask him/her if she can put you in touch with an Ofev representative, and have an in person meeting to go over all of your concerns. Ours suggested it and we did that. It helped.
They have really good “hot lines” to ask about other meds you take, new meds, and just information. Always can speak to a real nurse or pharmacist.
I’m not sure if this helps you with your choices, but it was trying this or working his way to an oxygen tank.
I am so sorry that you have to go through this; however our life has returned to a new normal. My prayers are with you!
Please touch base if you want to go over anything else.