Starting Ofev

[Kaf]

Hi Charlene,

My husband Andy has been diagnosed with Institial Lung Disease but could have Pulmonary

Fibrosis. He never had a biopsy to determine which he has. He was diagnosed while in the

hospital with Covid in Nov. of 2023. Having been an RN I started reading everything I could

get my hands on. We asked for Espirit first because I had read that cardiac issues could be a

side effect of Ofev and my husband has afib on and off. A side effect of Espirit is photo sensitivity.

Sure enough it happened to him–itch and skin issues. He stopped and restarted the Espirit but it

happened again so we switched to Ofev starting on July 16 of this year. He is doing fairly well. He

is nervous because there is the very common dreaded diarrhea. When he had a little episode, he took only 1 tab of Immodium and he was plugged up for two days. Then another day he took a half and same thing. On a third episode, he took a little Kaopectate and he had a little trouble there too. As our doctor told us, it’s trial and error. I think only about 3 times in the past almost two months is pretty good.

I pay a great deal of attention to everyone who contributes to this site and others as to how

they deal with side effects because they are having them–not the doctors. In particular the amount of protein to be taken with each dose. They suggest about 25 grams of protein with each dose. I bought

protein powder, yogurt and cottage cheese, Nut butterse eggs, meat, fish and dairy products all have plenty of protein so I change it up. At night Andy usually has a half of peanut butter sandwich or some crackers and peanut butter. As one man said, he usually doesn’t worry so much about lunch.

I think my husband’s case is moderate presently. He gets tired especially with stairs but has no cough and no need for oxygen at this point but did have a little decline on his pulmonary tests recently. Hopefully if he can stay on Ofev, he may remain at a stable level which I wish for all of you dealing with this. You asked about possible causes. My husband had some unhealthy factory jobs aroung age 20, his aunt had chickens in the building he lived in and we had a coal stove for many years. That said many people have fibrosis even without any known exposure.

sincerely, Kathy

[Kaf]

This is Kathy again. I get a lot of forum emails and try to read all of them. I did not realize that the post from Charlene was from 2018, but maybe my post will be of some use to someone as many have been to me.