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I also have itching with Esbriet and I have been on it for two years now. Backs of my hands, back, legs, ankles…you name it. Lotion helps sometimes. When it gets especially bad on the backs of my hands I have used cortisone cream, which seems to stop it.
(George, aren’t you clever, noting Bob’s avatar is a pup!)
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I too have experienced itchy skin and and redness on my hands, forearms and neck area and some tingling, but not until 4 months after starting Esbriet. And then my face and eyes became puffy. I checked with dr. and not my regular pulmonologist, suggested stopping the Esbriet for a week and then start medication again with one tab 3 times per day for a week, then 2 tabs , then back to normal dose. Everything had returned to normal after 5 days of stopping medication. After starting the Esbriet, I noticed itching and redness again. I cover completely, use sunscreen and try to avoid the bad times of day for sunshine..11am til 4ish. Am also wonder if heat triggers these symptoms? Has anyone gotten treatment for this side affect? Or suggestions to relieve these symptoms?
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Glad to know that I am not the only one with Esbriet itchiness. This side effect is noted on the Esbriet insert, so I talked to a Genentech pharmacist, but no help there as he was unaware of this side effect. I itch all over, but especially on my back. I have found some relief with CeraVe Itch Relief Moisturizing Cream. But I have pretty much decided to tolerate itching in order to get a full dose of Esbriet. I have been on it for a year and have plateaued this year. Biggest problem now is fatigue and sleeping too much, along with coughing.
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Thank you for the CeraVe information. I will put this on my list! My next plan is to check with Dr. and see if there is a prescription for this itchiness and rash. So far it isn’t bad since I have just started Esbriet after being off of it for a week. Sorry to hear about the fatigue and coughing. Wish you well. Do you know the difference between the Esbriet and Ofev?
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All that I know about the meds is from this forum. Some can tolerate one but not the other. Difficult to tell if they are slowing progression, but the clinical trials seem to indicate that. I read on this forum that half of PF patients do not make it past three years from diagnosis if they are unmedicated. I was diagnosed Feb. of 2019. There are people on this forum that are 8 or 10 years from diagnosis. There seem to be a lot of mice doing well and even with some reversals of PF. Hope these new meds move along.
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Hi I’ve been on Esbriet for 2 years without too many side effects but lately developed itchy ankles.
This is despite it being winter here with little sun exposure, the itch then spread up my legs, a chemist suggested “mometasone furoate 0.1%” a steriodal ointment. A tiny amount is rubbed on, in my case the itch has disappeared completely.
It might work for others
Cheers Mal
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Yes I have intense itching but more worrisome is a progression of extensive eczema of chest, back, outer arms and outer thighs, top and sides of feet. The rash started localized to my thighs last September. I’ve been on Esbriet since 2016 with no appreciable progression of ILD. I have fortunately very few symptoms (no cough just shortness of breath with extreme exercise) so I was reluctant to stop Esbriet. I took a drug holiday in December for 2 weeks and now my pulmonologist want me to stop again – it is 2 weeks and I’ll be seeing her next week.
I use a ‘tub’ of 0.1% triamcinolone cream and moisturizing cream – another tub of cetafil. Though the best treatment is underarmor long underwear to stop me from scratching – getting difficult to comply in the summer but I live in Maine so what’s summer? My rash isn’t related to sun exposure and I’ve had a biopsy by my dermatologist.
Any advice would be appreciated. I’m wondering about changing to another anti fibrotic.
Ian N
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