Sally Schindel
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My mother died of it in 2008 at age 91 after only about 2 years of symptoms. Her mother, my grandmother died of it in 1968 at age 85 or so. My cousin, same family line, died of it in about 2008 at age 74. Now my turn, age 75 now, discovered at age 71. Mine is not yet very advanced, lung function still very good except at high altitudes. I’m hoping mine will be like my Mom’s and let me live into my nineties. I stay active to increase those odds. My younger sister has been assessed though she has no symptoms and found to have no scarring. She did that in conjunction with a genetics study in Colorado.
I also had some gene testing done that tells me I don’t have the short telemeres or some other genes that are suspected of being related to PF.
It all remains pretty mysterious.
Wishing you and your family all the best.
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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 take pirfenidone for IPF, the generic for Esbriet. About 2 months after starting it last year I had a severely perforated colon from diverticulitis that required removal of 20% of my colon and a colostomy. I’ve since had the colostomy taken down and surgeons tell me a full colonoscopy shows my remaining colon is in excellent health.
I’d not connected the pirfenidone to that event as I’d had diverticulitis in prior years. But now I’m wondering….
I’ll be interested in anything you learn about the connection. I hope you are now doing well.
Sally in AZ
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I received 1 90 pill bottle of 801 mg then a note they no longer have it in stock. I then ordered & received 270 of the 267 mg. They also appeared to briefly have the 801 mg again so I ordered & paid but they then later refunded my payment.
Very inconsistent & undependable but the price is great at about $200 per month.
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Received my 801mg 90 pills, 1 month rx yesterday. Took 1 week. $199+ $5 shipping. They look a little different than the CVS Specialty Phcy I’ve been taking but my copay went up to $1400+ per month for those so need to find alternatives. My pulmonary NP is fine with this.
New wrinkle-before I even received my first delivery I received an email from Cost Plus that they currently do not have 801mg, only 267mg. So I’ve asked NP to prescribe those also for when they do not have 801. I’ll just need to swallow 9 per day vs 3. Pay $82.40×3 plus shipping, $252 vs $204 when they have the 801s.
Hope this will keep working out OK.
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I just ordered my generic Pirfenidone here. 801mg 3x daily, 1 month supply of 90 = $199 + $5 shipping. Very easy to order. They do not go through insurance for this drug.
My Aetna Medicare Advantage plan increased my copay from $200+ to $1400+ per month as of 1-1-24 so this will be great news if all goes well with it and stays well.