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Secondary side effects of PF management
A couple of weeks ago I wrote about the unexpected side effects of hearing loss as a patient living with PF. The permanent cause of this has been linked to the management of my lung disease due to certain medications. I consider this a secondary side effect of PF and unfortunately, it’s not the only one I’ve experienced. I’m now learning of issues with my kidneys, likely as a result of processing the medications I need to continue living with this disease.
Since these secondary side effects are often unknown to patients and caregivers (at least, they were for me…) I’m thinking of writing a column on Pulmonary Fibrosis News about this topic.
Have you experienced difficult, permanent, or unexpected secondary side effects as a result of your disease or the management of PF?
Please share so we can raise awareness together!
Charlene. -
6 Replies
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Yes. I’ve totally lost my voice. I finally saw laryngologist #2 today who believes it may be a fungal infection as a result of steroids (Prednisone and an inhaler) and several back to back bouts of pneumonia and upper respiratory infections with endless coughing over the last six months. He gave me an antifungal and I have to come back in two weeks when he will check and also biopsy my vocal cords.
Huge sigh…
Hoping you get some relief, Charlene!
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Hi Charlene
Another side effect for me was weight loss, I’m on Esbriet which in my case led to a major loss of appetite, while on the full dose of 3x 267mg tabs 3x a day.
I’ve dropped down to 2x 267 mg x3 a day, and I can enjoy food again.
I’ve put on a couple of kilos now, and I am enjoying eating again.
I’ll have the big breakfast thanks 😊
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I also experienced a major weight loss ( 20 pounds) on Esbriet at the doseage referred to above . A loss of appetite in association with mild nausea prevailed during this period. Episodic severe diarrhea forced me to wear diapers whenever away from a toilet. I will discuss changing the doseage of Espriet at the earliest meeting either the pulmonologist.
I am 3 years following a tissue diagnosis (robotic lung biopsy) and probably 5 years total ( median death at 4 years). PFTs have not been repeated.
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I too have lost weight, 40lbs to go with a severe cough that can’t seem to find anything to help! Prednisone boost helps for a while but Pulmonologist is reluctant to keep prescribing?? Anyone have anything that works for them?
Randy
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Hi, I lost so much weight on OFEV. I also experienced hearing loss and suffered from GI symptoms that resulted in loosing nutrients with the consequences of them. I continue to take the drug as it is my only hope at this time.
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I would like to add the consistent cough with sensitivity of my vocal area.
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