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Side effects of exposure to the sun
- Have been taking it for 3 months now and am having a bad reaction reaction to the sun as I was warned about . Red blotchy skin and pealing. Anybody had the same.
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18 Replies
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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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I was on Ofev for 4.5 years, and then switched to Esbriet, since Ofev was not helping my lungs. Two months after starting Esbriet I moved from Prague to Florida, and after a couple of months– despite sun screen and protective clothing– I developed a HORRIBLE rash on my hands, ankles and back of my neck– everyplace that the sun could reach. After two months of fighting the rash with heavy dose of Prednisone (no effect) and local ointments (no effect), I stopped taking Esbriet. Within two weeks the rash disappeared almost entirely, and after 3 weeks I started taking Esbriet again– one pill a day at first, rather than 3. I plan to increase the dose gradually back to 3/day. I really hope that the sun sensitivity will gradually subside, since I feel as if Esbriet was good for my lungs.
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Oh no. I live on an island and looking into starting Ofev. I am always outside. I hope Ofev doesn’t have the same side effect as the Esbriet.
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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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Dear Donald,
Have you found that the side effects of Ofev diminish over time? I have recently started on it and cramping is bad, no diarrhea so far which surprises me since I have the cramping.
Thank you.
Marilyn Cellucci
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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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Thank you for those facts! Do you know the mean life expectancy for an IPF patient on Pirfenidone, to compare?
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I was intrigued by what Dr. Salzberg wrote. Since Ofev was approved for use in October 2014, it would be impossible to find survival of 11.6 years post diagnosis. Furthermore, the MEAN means nothing, since it depends on outliers in the distribution– the median is a much more reliable predictor. On the other hand, the mention of Sarcatinib for IPF was encouraging news, which I hope to follow.
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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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Nothing concrete but the trial gave those taking the drug 11.8 years compared to the placebo 3.5
Everything is an average so all we can do is keep on going with a positive attitude and enjoy life as we know it
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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 had the same experience with sun exposure while on Esbriet. I live on the water so I would cover up and use sunscreen to reduce the risk of a burn or skin cancer. My skin would feel like it was on fire if I missed a spot. Sam …
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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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I really don’t know if I can post this here, if not please remove it. I have had a big problem with the sun’s reaction. I get a red itchy rash on my hands, neck sides/back, and face. I had a problem with the sun reacting with the sunblock which caused a rash too. I found a brand (other than Columbia) specializing in all kinds of SPF 50+ items like hats, clothing, and gloves. The name is Coolibar. I hope this can help you.
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You should have been warned to stay out of the sun, wear sunscreen on all exposed skin when you go out and supplement with D3 vitamins, as your body needs the D3 that the sun provides.
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I was indeed warned, and heeded the warnings. The original sun exposure was less than an hours, fully clothed, with sun screen (SPF 60), and in a shaded area (no direct sunlight). However, the effect was to turn my skin-red in all exposed areas, which then developed that awful rash. I stopped Esbriet for 3 weeks, but when I started (1 pill a day), the rash returned with a vengeance, even though I avoided the sun. I had to stop Esbriet again, and am waiting now for the rash to disappear again so I can resume Esbriet. This drug is good for my lungs (I think), but horrible for my skin.
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I had one episode with a rash from sun exposure and was told to stop the medication and take Benadryl until the rash went away and then start the Esbriet regime all over again from 1 3x a day back up to 3 3xa day now I switched to the one combined pill 3 x a day and am very careful in the sun try to remember to put on sun screen, wear a hat etc. Also supplement with D3 vitamins. very important, why that is not made a priority through the pulmonologists I will never know.
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