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Donald Otis replied to the topic Remedies for Nausea: Any Tips? in the forum Diagnosis Information and General Questions 4 years, 3 months ago
Oh, my god. Esbriet, even after the reformulation, still makes me sick. Ofev was worse, way worse. In the very beginning of treatment, in 2015, my pulmonologist diagnosed my symptoms as 24/7 morning sickness. In 18 months, I dropped 35 – 40 pounds.
One thing that really helped was THC, the active ingredient in marijuana. Of course, I can’t sm…[Read more]
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Donald Otis replied to the topic Indigestion & Acid Reflux in the forum Join the Discussion: Welcome to all PF/IPF Patients 4 years, 4 months ago
I had bad GERD earlier, prior to the pneumonia that we think has lead to IPF. Since the diagnosis, I have used Prilosec (omeprazole) daily. I also use Zofran (ondansetron) for the side effects to Esbriet.
My pulmonologist and I have found a couple of studies that tie GERD to IPF, and therefore the potential problems from omeprazole are o…[Read more]
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Donald Otis replied to the topic An Unexpected Difficulty of Pulmonary Fibrosis. in the forum Young Adults Living with Pulmonary Fibrosis (40 & Under) 4 years, 6 months ago
Between IPF, fibromyalgia and the handful of drugs I take daily, I am pretty sure I don’t remember who I am half the time. I made the mistake of talking to the boss about this, so of course now I am under surveillance. Because the ADA is not really that important. C’est la vie.
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Donald Otis replied to the topic Starting Esbriet in the forum Esbriet (Pirfenidone) 4 years, 8 months ago
I have written about this earlier, but it bears repeating:
I was diagnosed with IPF after a lung biopsy in November 2015. We caught it early, and my doctor at that time felt that, within the one to ten year range, I would probably fall into the later end of this.
I started Esbriet using the 3 capsules 3 times a day in 2016. I changed to the 801…[Read more]
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Donald Otis replied to the topic "Surviving IPF" is More Than Just the Physical Impact of the Disease in the forum Living with Pulmonary Fibrosis: 50+ 4 years, 10 months ago
Yeah, I am afraid that I have put an unclosable space between me and most people. I have a friend or two who are really close, but for most people, the anger and the pain and the fear have set me apart. I feel like I have been the grumpy old man who always talks about dying. Ah, well. I mean, I am a GOMWATAD.
I try to focus on good things. It d…[Read more]
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Donald Otis replied to the topic How does PF effect life expectancy? in the forum Diagnosis Information and General Questions 5 years ago
My pulmonologist was also excited by the results, and is making this her primary choice for her other patients. I am pretty excitable about this in person 😉
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Donald Otis replied to the topic How does PF effect life expectancy? in the forum Diagnosis Information and General Questions 5 years ago
OK, yes – to clarify: I started Esbriet using the 3 capsules 3 times a day in 2015. I changed to the 801 pill format this January, so that is 1 pill 3 times a day. So, Rick is exactly right, same dose in a different wrapper.
The capsules break up in the stomach, while the pills pass through, as you might expect. I find that the bulk of the nausea…[Read more]
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Donald Otis replied to the topic How does PF effect life expectancy? in the forum Diagnosis Information and General Questions 5 years ago
PLEASE! If you are still taking the capsule form of Esbriet, please talk to your doctor TODAY about switching to the brown 801 tablets.
I know I am lucky. We caught my IPF early, testing shows that Esbriet works for me. But, I also lost 40 pounds due to the nausea, and basically had given up. I applied for early retirement with Social Security,…[Read more]
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Donald Otis's profile was updated 5 years, 1 month ago
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Donald Otis became a registered member 5 years, 1 month ago