Donald Otis
Forum Replies Created
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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 smoke, so I have used edibles and topical products. I believe that this is one of the reasons I didn’t just shuffle off in the last three years, and I advocate its use. You have to start low and slow, but you may find relief.
The other thing, the one that really works, always works – Zofran. If you are on either Esbriet or Ofev, it is my firm opinion that you should have an open scrip for Zofran. My pulmonologist agrees.
Man, best luck.
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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 out-weighed by the benefits.
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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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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 pill format this January, so that is 1 pill 3 times a day. So, 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 effects are due to the medicine being absorbed in the stomach. Going to the pill format dialed side-effects down from 100 to about 5.
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, because I was certain I was dying, soon.
I started the new formulation in January. I have rescinded my retirement (yeah, you can do that; pay the government back and it’s like you never retired…). I still have Zofram (the kind that dissolves) for bad days, but those are much fewer and farther between.
As for why I made the change – I didn’t, nor did my pulmonologist. The Kaiser Specialty Pharmacy just sent the new formula when we re-did my prescription in January.
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 am not “well”, but I am not on death’s door, either. I am actually begging you – get the pills! Do! They have changed my life! -
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 doesn’t always work, but all you can do is try, right?
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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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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 effects are due to the medicine being absorbed in the stomach. Going to the pill format dialed side-effects down from 100 to about 5.
I still do have some nausea, but Zofram works fine on that.
As for why I made the change – I didn’t, nor did my pulmonologist. The Kaiser Specialty Pharmacy just sent the new formula when we re-did my prescription in January.
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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, because I was certain I was dying, soon.
I started the new formulation in January. I have rescinded my retirement. The whole nausea thing, dialed back from 100 to about 5. I still have Zofram for bad days, but those are much fewer and farther between.
I am not “well”, but I am not on death’s door, either. I am actually begging you – get the pills! Do! They have changed my life!
