Starting out with Esbriet
First thank you for all of the information and first hand experiences from others with IPF taking Esbriet.
Presently I’m on my second week going on my third week moving from two capsules three times a day to three capsules three times a day. If two capsules each dose is bad I can’t imagine three capsules each dose.
First my side effects: Fatigue. I fall asleep a lot. I’ll be sitting in my chair reading and two hours later my wife is waking me up.
Stomach problems not too bad, but go to the bathroom a little more frequently.
Occasionally dizzy, but not to the point where it is debilitating.
Trouble sleeping…..not falling asleep, but at 2:00 am like clockwork I wake up so congested that I can’t clear my throat or nose.
Diagnosed approximately three months ago but it first showed up in my lungs in 2018 when I had open heart surgery to replace my Aortic heart Valve and double bypass. They did a CAT Scan to check my lungs and surrounding tissues. At that point there was no mention that I had IPF and it was a pulmonologist who reviewed the X-ray. It wasn’t until this year 2022 that my primary doctor recommended me to a pulmonologist because he saw something suspicious on my yearly X-ray.
So my IPF has been there for 4 years and not diagnosed until three months ago. My wife and I were shown both X-rays side by side…2018 vs. 2022. No difference at all except the 2022 was better defined.
l like so many of you had a real difficult time getting my insurance company to help out. I have Humana/Tricare. They absolutely denied OFEV and after several tries and two months later they approved the Esbrit.
My question to this group is do you ever get used to taking it, do the symptoms lessen over a certain time. Do you ever stop thinking about it and what it’s doing to your body.
I’m 68 and will be 69 in March. Retired US Army Veteran.
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