@karenb
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Karen Bowen replied to the topic Cost of Ofev in the forum Ofev (Nintedanib) 4 months ago
Hi GreatfulDeb….. I went thru Boehringer Ingelheim for OFEV, filled out the financial aid info & I got it for free. I’ve Medicare & BCBS. Boehringer was a much quicker turnaround than dealing with Genetech (who tried to block Sandoz from developing & making the generic Esbriet).
You do need to go thru your Doctor. They took the paperwork &…[Read more]
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Karen Bowen replied to the topic Optimum Esbriet dosage in the forum Esbriet (Pirfenidone) 8 months ago
Joing in better late than not at all!
I’d been on Exbriet for 3 months & had no side effects until recently. My doctor cut me back to 2 pills 2x’s a day but the lack of energy & dizziness only improved a bit. I asked him if I could take a break. It’s been 10 days & I’m not feeling any different – dizzy, no energy basically still. He has ordered…[Read more]
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Karen Bowen posted a new activity comment 8 months, 1 week ago
Thank you! Had a hell of a time signing in! All appears well now 🙂
I also belong to an ILD Collaborative here in the Boston area – great group of people, have zooms discussing many topics with professionals – Doctors, Repiratory Therapists, looking forward to the oneon diet & IPF. I’ve actually shared with them some of the things I’ve learned…[Read more] -
Karen Bowen replied to the topic Leaving the house on 4LPM oxygen? in the forum Diagnosis Information and General Questions 8 months, 1 week ago
Hi again….. I’m on 4lpm myself & when my stats crash I have to sometime bump up to as high as 7lpm, 6 at the least. Doesn’t give any of the tanks much life. There is something called an oxymizer that can be used to conserve oxygen. I believe you need to be tested for it to make sure you’re a candidate for using it. Your RT will test you.
***If…[Read more]
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Karen Bowen replied to the topic Can a spirometer increase lung capacity in the forum Diagnosis Information and General Questions 8 months, 1 week ago
Hi Natalie! YES! the Spirometer will exercise your lungs & help with expanding their capacity. My Pulmonologist and the doctors I’ve encountered at the hospital all have told me to use it. My PT & OT have also pushed me to use it. “At every commerical” they tell me. Our disease is one of progression so if this helps keep the dogs @ bay, it’s…[Read more]
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Karen Bowen became a registered member 9 months, 3 weeks ago
Welcome to the PF forums Karen, we’re glad you found us.
Thank you! Had a hell of a time signing in! All appears well now 🙂
I also belong to an ILD Collaborative here in the Boston area – great group of people, have zooms discussing many topics with professionals – Doctors, Repiratory Therapists, looking forward to the oneon diet & IPF. I’ve actually shared with them some of the things I’ve learned…[Read more]