Painful side effects?
Does anyone have experience with midsection pain that was made worse by taking Esbriet?
My mom started taking Esbriet several weeks ago. She has long complained of pain and discomfort in her chest and all around her torso (seems vague, I know) that has gotten worse as her IPF has progressed. She’s currently only able to tolerate 2 pills of the 9 that equal a full dose of Esbriet, as the pain she’s experiencing is worse since she started taking it.
She also has other difficult symptoms, such as “brain fog,” and since she also had a COVID-19 infection at the end of December it seems impossible to know how much is that, how much is PF and how much could be side effects of the new drug.
I’ve read a lot about side effects of Esbriet and haven’t come across pain or confusion as being among them, but the nurse she spoke to (who works for Genentech) seems to think it is possible. Her pulmonologist seems to expect she will titrate steadily up to the full dosage, but that seems hard to imagine.
I also saw on another thread what my mom’s nurse also mentioned, that in other countries (like Japan) the expected full dose is lower than what it is in the U.S. My mom is pretty little, especially since this disease has caused her to lose weight. So I can see her continuing Esbriet at a low dose and maybe getting some benefit from it, but does anyone know if it could actually be aggravating pain and inflammation? It’s not clear where this comes from.
Thanks for any insights you may have.
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