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Some info please on rash
Howdy All
Has anyone been unfortunate enough to suffer from a rash from either the medication itself or from exposure to the sun if so
How long did it last and what treatment did you use
Cheers
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6 Replies
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I have been on prednisone since early 2017. Pre-transplant the dosage fluctuated at times taking 40mg/day. Post-transplant I am on 5mg of prednisone daily. I am fair skinned and did have what I describe as an acne. i recommend seeing a dermatologist who can confirm what you are experiencing and prescribe something for your skin. Sam …
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I assume you’re talking about Pirfenadone. I’ve been on it for 3 months and have had no side effects. I’m beginning to wonder if it is working. I was on Ofev for 2 years and had constant diarrhea and nausea.
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I have been on Pirfenidone for over 2 years. Last year I got a terrible, excruciating painful and unbearable itchy rash from sun exposure. I was talking to my neighbor for about 5 minutes and foolishly forgot about the sun. Believe me when I tell you that you must remember to stay out of the sun to avoid the consequences of the rash. I was lucky because I got an appointment with a dermatologist a few days later and was subscribed Calcipotriene Cream 0.005% which I applied several times a day on my arms and legs. I do not remember precisely the application procedure but you could only put it on for a number of weeks and then you had to stop for about a week. It took almost a month before it cleared up. Also, if you get a rash stop taking Pirfenidone immediately. After the rash was under control, I was able to resume Pirfenidone 14 days thereafter. Dosage modified back to original ease in dosage.
I have placed a picture of the sun on my exit door so I am reminded to stay out of the sun. So far this has worked for me. I also have sun resistance clothing that I put on while gardening and driving to avoid any sense of the sun.
Best wishes to you.
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I had an episode with the rash ftom the sun on ears and neck that seems to have been the result of my daily grapefruit consumption Jan-Mar in AZ. I’d not had the rash prior to that after 6 months of pirfenidone full dose and had become lax in covering ears & neck. Dr says the grapefruit magnifies the intensity of the drug.
To get rid of it I had to stop the drug, wait about 3 weeks for rash to recover, then slowly work back up to full dose.
The rash is awful. Don’t risk it. Dermatologist told me there is really nothing to do for it other than hi dose 2.5mg hydrocortisone cream.
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I have been on Pirfenidone since 2016 and have had very slow progression of ILD – which I attribute to this med. I have tolerated it quite well exc for the itch which started before I changed to generic pirfenidone. I am a physician and have guided treatment and tried everything – UV treatment (clinic and home), topical steroid, topical oils, underarmor compression top and bottom, etc. but still the itch progressed to a rash which I’ve had biopsied twice, THEN I went on Dupixent injections every 2 weeks, and the itch was gone in 2 weeks and the rash was gone in 4-6 weeks. l’m a believer. I have a great dermatologist and my Boston pulmonologist agrees with my treatment plan.
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Hi my mother had a red rash on her back and breast and under her arms. It was itching her. She was covered in red splotches. She was on a low dose of Ofev which she hated and then the Tyveso came out. I believe it was some medication that did that to her. When I took her to the pulmonologist I asked if she could stay on 10 mg of prednisone everyday with her 24/7 oxygen. He agreed to that. She felt 75% better while taking the prednisone. After seeing another pulmonologist they winged her off the prednisone and put her on the Tyveso. She used that about 10 days and she became deathly ill. But in answer to your rash it maybe a new medication or medication you are already on. God bless you all🙏
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