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I got too much sun once and had to stop the Esbriett and take sudafed until the rash went away. Then you have to work back up to 3 pills 3x a day.Your Dr. should have made it clear that you need sun screen and to cover all other exposed skin before going out. After a while you get a little less sensitive but, it is the big draw back to Esbriett, the big draw back to OVEF or what ever it is called is heart complications which already runs in my family so I wasn’t going to add to that, they both have stomach irritation to deal with but that can be remedied fairly easily.
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OFEV to my knowledge has no photosensitivity side effects. I am a huge sun worshipper and have been on OFEV for 4.5 years and have not had any issues. My Pulmonologist intentionally steered me away from Perfenidone as he knew my love on the sun. Still off course important to use skin protection. GI side effects vary from patient to patient. My issue had been nausea so I chase that with Zofran 8mg. Happy Valentines ???? Day. As for GI side effects from what I’ve read Esbriet has issues just like OFEV.
DON
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Keep in mind the average MEAN life expectancy for IPF patients on OFEV is 11.6 years versus 3.7 years on a placebo. A recent 3rd medication (sarcatinib) is approved or will likely be approved for IPF. I am also convinced (as are many others) that untreated OSA (Obstructive Sleep Apnea) is very detrimental to IPF patients. Liver issues are more common in thinner women and people of Asian descent.
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Regarding cardiac issues, I went to my Cardiologist PRIOR TO starting OFEV. This was recommended by my Pulmonologist. Important to rule out (and get a baseline for) any pre-existing pulmonary arterial hypertension (echo) and Atrial Fibrillation (need for blood thinners—a potential issue on anti-fibrotics). My family history of AFib (brother) was not a deal breaker for my ability to use OFEV.
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I had some rash on my arms and back of neck a couple months after I first started taking Esbriet when I traveled to Sunny Florida. That was the only time though. After about 6 months of taking Esbriet I no longer got any rashes even after golfing in the sun for 5 hours and no sunscreen. I guess my body got used to Esbriet and made its own necessary adjustments.
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I also reacted to a brief time in the sun. I used sunscreen on my face an neck and the rest of my body was covered. It was very hot that day. When I got home there was a rash on my face and by evening I was itching all over. Next day was fine. Now I stay out of the sun. An umbrella is helpful.
We have to make hard choices with our disease. If indeed these antifibrotics slow it’s progress I will do what ever it takes to make them work for me. I take Esbriet.
Each responder answered differently. You have to see what works for you. If you get a sunburn or a rash every time then I would stay away from the sun.
IPF is, to me, worse than cancer. There is very little to be done to feel better and no cure.
Sit in the shade and sip a non alcohol mojito.
Meredith in the South
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Sunscreen with high SPF is important when startin Esbriet. It was suggested that I use SPF of 50 or higher. One day early on I hadn’t put any on and was talking to a neighbor in the sun for about 10-15 minutes and I could feel my skin begin to tingle. I was careful after that but found that about six months later it wasn’t a problem for me. I’m sure individuals vary depending on skin sensitivity but sunscreen is the answer without a doubt.
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Was recently diagnosed and evaluating Esbriet vs OFEV. Realize everyone reacts differently so understand the only way to really know is begin on one of them. Have previous heart conditions and susceptible to GI issues so would like to start with Esbriet. I live in the south and continually outside so possible sun side effects with Esbriet is a concern. Have an olive skin complexion and almost never burn despite rarely using sun screen. For those on Esbriet have you noticed any correlation to the effects of the sun to your complexion?
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