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Itchy Skin with Esbriet
On the full dose of Esbriet for about two weeks and have developed itchy skin. Chest, back, legs, etc. Not the end of the world, but it sure is annoying. Anyone else? Have you found an answer?
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32 Replies
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I had some itchy skin and rashes(from the sun) when first taking Esbriet but they definitely diminished over time. I still have a sunscreen stick to rub on the back of my hands when driving or golfing.
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I am starting Esbriet next week after stopping Ofev because of gastric side effects. I have been in Ofev for 3 years and have remained stable so I am disappointed that I can’t tolerate it anymore. I play golf and am concerned about the sun exposure. Will I need a hat to guard against scalp exposure (I am a woman with normal hair amount). Will I have to put sunblock on every two hours? Also, how do you manage the 3x a day Esbriet dosage with food? Taking the pills every 8 hours would mean getting up in the night and eating something which would be horrible for my acid reflux. Can you take them at 8 am, 1 pm, and 6 pm – just 5 hours apart? Thanks in advance for any advice you can provide.
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Interesting, Rob. I stopped Esbriet for two weeks at the suggestion of my pulmo, but the itchiness continued. We do have a cat, but have had cats for a long time. No problem with the sun. Still looking for an answer. If you are in fact a dog, this might explain your itchiness.
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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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So let me foggy this up just a bit? By choice I’m not taking any specific meds, age 84. Have had signs of scarring in xrays and scans over 10 years. Only 4 years ago it became an issue because of shortness of breath on short walks to the street. Then they said it was IPF with no majoe changes in two years (we’ll see in a month) and offered up the only drug OFEV for mine which is IPF but resistive type (harder to inhale than exhale. Didn’t like the sound of the tradeoffs between the meds and not getting 10% extra walking distance in the end, so here I am. Dlco 25% predicted, not great. Oxy has gone from L3 to L5 on portable concentrator, Inogen. Yes breathing more difficult, weakness in arms and legs from a 5 month 25lb weight loss (my wife says coughing cost me the weight) is coming back a bit after light 3# weight lifting and some small stair stepper light exercise. It does help a bit. However I have been “plagued” for almost 2 years with the eternal itch…….. wanted to say something else. Like others we have tried all the creams and about 5 different doctors have said its everything from ezcema, to bug bites before shaking their shoulders and head and saying gosh “I just don’t know”. A more recent Pulmonologist gave me Azythromycin as a prohylactic every couple days against an exacerbation, and after 2 months I decided to quit that this morning on the chance that it makes the itching worse. I have had Gabbapentin and other forms of pain relief suggested but none work. Arms, ankles and feet, thighs, back and sides of rib cage. If I get rid of this then I can tolerate gasping for breath :-), I think. After a wet eye now and then, I smile and say, gosh at least I am still around to read about the advances of a mighty large batch of professionals who are working hard to get us the solutions and not the band aids. Lets do all we can to keep this forum as a destination of known, unknown and wished for solutions since your solution might not be mine and vice versa, but we all need to see them to pass it on too. Maybe a new forum called “Itching”?
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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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I also use crerave cream for the itching and it helps to stop the itching. I feel better knowing this is the Esbriet meds.this is better than the nose bleeds from 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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Glad to hear this. I definitely will ask my dr. about this. I have terrible itchies on my arms and now my chest. It itches like poison oak. Otherwise the side effects of Esbriet are minimal.
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I also have itching on my limbs ,that is more active later in the day. Use Cerave cream.It helps but still active daily. Stopped the Esbriet about 3weeks ago.my pulmonologist suggested 10 days. I Was always tired ,with no appetite.I didn’t feel I was feeling any better taking Esbriet. I Feel alive now,doing lots more and enjoying my time,walking,riding my bike. My appetite is back. I Would like to try another medication to slow the progression .Im 78 and try to stay active.thanks for all the comments,it helps to swap experiences.
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Thank you, 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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I started Esbriet last August with minimal side effects, only fatigue. In February I developed skin itch on my neck, chest, and back of my hands. Pulmo suspended treatment for one month. As soon as I used Esbriet again in April the itch started again! I’m now using 2 x 3 a day. Pulmo wants me to start 3 x 3 but I couldn’t tolerate it last time. I imagine that the itch will get worst. Is there a proven remedy for this? I feel tired and sometimes brain fog. Is anyone experiencing this?
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I do, but I have not read where the Esbriet is the likely cause, I also take thyroid meds which states that itchiness is a side effect, and it IS VERY annoying.
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How about trying Benadryl, Diphenhydramine HCL 25 mg, if you take it before bedtime it also makes you sleepy
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I suffer from the very same thing and my GP prescribed Advantan and that has helped tremendously.
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I have been on Esbriet for over 6 years. Near the beginning, I experienced the itching along with difficulty sleeping. My Doctor prescribed Hydroxyzine, which I understand is somewhat similar to Benadryl. It has been quite effective and I continue to take it nightly.
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Hi, I have itchy skin especially at night and on my legs. I find that if I cream my legs with Gold Bond anti itch cream before bed the itchiness goes away. I’ve been on Esbriet for 2.5 years.
Kathryn
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Hi Kathryn, I stopped Esbriet about three months ago because of the itching on my limbs and a severe dry cough. In this time, the coughing has almost completely stopped. The itching was still around, but it was less intense.I have restarted Esbriet at the minimum dose of 267mg three times a day with food.I am starting to feel tired most of the day,I can get up in the morning and take a nap.I fight it for now,but not sure what is ahead when I start the full dose.
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I am sorry if this is a repeat reply. But I don’t see that it made it into the log. I am actally on Ofev and am not sure if that is a factor in my itchy skin, mostly worse at night. I love Aquaphor for healing skin, but they also make itchy skin relief, I take the tube to bed with me and rub it on the spots until I can fall asleep. It really does work.
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I was on Esbriet and developed itchy, almost like measles. I had to come off because they said it was an allergic reaction. Raised, itchy red bumps all over. I was put on antibiotics and a prescription CeraVe cream. It took about a month to go away.
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And I thought it was only me. Thanks for posting.
I was diagnosed with familial ILD in 2016 and have been on full dose Esbriet since that time. Disease progression has been very slow and at age 71, I am able to do normal activities of hiking and biking though now with a pedal assist ebike. I live at sea level with sats 95-97 but when I visit Colorado my sats are low 90’s but I accommodate after a few days to about 94.
Itching started in 2021 and it was really intense. I’ve had 2 biopsies both showing spongiotic dermatitis without obvious relationship to a drug eruption. I’ve done 2 drug holidays, first 2 weeks and then 8 weeks without change. My dermatologist calls it non rash purititis. I’ve had a full work up.
I’ve tried Gabapentin but didn’t like how it affected me. With my pulmonologists approval I started UV-B twice weekly ‘tanning’ in Oct 2023 and it does make itching more manageable and I no longer have the rash which had been significant. I have not had photosensitization. My regimen in 1% triamcilolone ointment (tub and not cream) twice a week and a body oil (Neurtrogena Sesame Oil – Costco) then Underarmor long sleeve top. It works.
I am a semi retired physician so I have been able to guide my treatment. Other’s might not be able to convince their pulmonologist to try UV treatment – you have to be cautious. There are also new injectable interleukin blockers (Dupixent) with lots of side effects and expense. Apparently some of these are also now coming out as topicals – though likely they will still be expensive.
Ian Neilson
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I’ve been on a full dose (801mg daily) of Esbriet since 2020. The first year to a year and a half I had itchy skin from sun exposure, no matter how brief. I bought sun-proof driving gloves, long-sleeved shirts and a wide-brimmed hat which helped tremendously. Sunscreen on any exposed skin was imperative.
I got reckless a few times and did not use my protective gear. My hands and arms burnt very badly to the point of severe swelling up and developing a horrible rash. My doctor prescribed a few creams and short-term steroid therapy. It cleared up in about a month but the itching was frankly maddening. Sun sensitivity is a known side effect of Esbriet.
After about one and half years this side effect went away slowly to the point that now I enjoy full sun without any ill effects. I’ve heard from others the same gradual disappearance of photosensitivity and in some others it does not subside.
I hope this helps.
Michael
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I had the same issue with Esbriet in the early stages of taking it. My Doctor prescribed Hydroxyzine, which is similar to Benadryl. It has taken care of the problem and helps me sleep better at night too.
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I’m having a similar experience! I’ve been on OFEV for years, and a biologic injection for about 13 months and for some reason my skin is reacting to something with hives all over my chest and neck (nowhere else right now). My doctor is going to try to eliminate some of the IPF-related medications I take to manage everything, but I am worried about having to stop OFEV and start it again. I’m now on a prescription antihistamine to try and keep the hives at bay, but I can’t say its working unfortunately! Is there anything that makes yours worse or better? Ie. heat/humidity seems to worsen mine.
Take care,
Char.
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I had the same thing and asked my General Practitioner Doctor. I also had trouble sleeping. He put me on Hydroxyzene, which I take at night. It helped greatly. Hydroxyzene is similar to Benadryl. Check it out.
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Since I replied in March 2924 I have started Dupixent injections every 2 weeks with amazing results. No itch and the rash from scratching is getting better after 2 injections. It is supposed to work within 2 months but I’m sold on it. I still do home UV therapy but use much less topical steroid.
I was going to pay out of pocket but met my copay deductible after the first dose so it is now covered under my MC plan with an HMO Aetna Advantage supplement. It is expensive.
I would recommend a dermatologist referral and likely biopsies. My pulmonologist is okay with my plan
As my dermatologist says: it’s a miracle drug!
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Yes I have been on Esbriet 3 years now and I definitely have itchy skin. I use antiitch cream like Gold Bond it really helps.
It is on the expensive side so I do alternate with the store brand antiitch cream and that works too.
I use sunscreen and that seems to help I do not get rashes.
My feet, hands, thighs and calves are especially itchy, I deal with it as it presents itself.
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