George Beck
Forum Replies Created
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I was diagnosed with FPF in Feb. of 2019 and on Esbrit since May 2021. No side effects. I don’t think anyone should avoid the two drugs because of side effects until you try them. Clinical trials show they can slow things down. No oxygen yet. Coughing and a lot of fatigue. Sept. scan showed no progress over June. My understanding is that the makers of Espirit have stated that their patients survive an average of nine years. Last month I added a diagnosis of Bronchitis which has been a son of a gun to overcome. But I am just getting better now and hope to get back to the treadmill. .
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Thank you, Mal!
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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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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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I received my third Pizer a week ago at Walgreens by simply declaring that I had pulmonary fibrosis. Second shot was February. I’m on Esbriet but that didn’t come up.
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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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My PF was diagnosed in 2019, but is progressing slowly. I did have neck pain for a year and a half which has recently almost disappeared. On one occasion it was severe, but usually just an annoyance. I tried all of the creams and patches without success. I didn’t think to link this to PF. My diagnosis was either muscle strain (prescription wasn’t helpful) or arthritis. I think I found the answer in this forum!
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I have been lucky so far. I worked my way up to nine 267 mg pills per day at meals with no side effects except for itchy skin (!). I have been on the high dose for three weeks.