I would love any tips on how to even get this covered. My pulmonologist prescribed Esbriet a year ago and it and it was $10,000 month. I don’t qualify for any financial assistance. I was able to find Perfinidone on Mark Cuban’s RX for $350 month, and now when I check it has gone down to $138 month (which is affordable). My Medicare part…

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That’s what we bought. We have 4 panels of the BIOMAX 900

My husband bought us the Platinum LED BIOMAX 900 which is medical grade (no rx required) I use it daily 20 minutes front, 20 minutes back. Not sure if it’s helping or not. My next CT scan is in December. So far I have had minimal progression, but that was before the red light therapy.

I’m glad you asked this question, and I am enjoying reading everyone’s response. I usually get “you haven’t coughed at all during …..” I find myself almost defending myself for having a cough free moment. I know there’s no harm intended, but yes.. I know I didn’t cough during dinner or whatever, and yes, I’m coughing now. Not something I can…

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I have tried everything for the cough. Nothing has worked for me. If I didn’t cough constantly I wouldn’t know I have this disease.

Hi. I also have familial fibrosis. Positive for the RTEL-1 gene and telomere shortening. I lost my mom and her two sisters to this disease. If I didn’t cough all the time, I wouldn’t know anything was wrong. I have been experimenting with peptides to help with my telomeres (Epitalon) and will pay out of pocket to have them retested. I…

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No, it has not affected my care, nor do I see that happening in my future. I’ve been a medical professional for 29 years and we have had the worse healthcare the past 16 years I have ever seen in my career. Our healthcare is already failing us…. in order for me to get Ofev it will cost me $11,000 month because my husband is still working…

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I had a consultation with a Stem cell center in Cabo, Mexico. They were very honest with me and said they haven’t had very good results treating IPF with stem cells. I did harvest my own many years ago, so I treat myself with my own twice a year. I cough violently for 1-2 days afterwards.

Thank you everyone. I was finally able to contact someone at the pharmacy. My doctor was ordering capsules, and they only carry tablets. Waiting for my prescription to arrive. Wish me luck…I’m dreading starting the medication.

Is anyone getting Perfinidone from Mark Cuban’s Costplus pharmacy? It shows on their website they supply it, but I got email after my Doctor submitted prescription stating they don’t carry it.

I’ve been doing IV NAD 250 mg monthly. I’m doing it for telomeres support, as my telomeres are shortening faster than my chronological age due to the IPF.