Amy
Forum Replies Created
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I think there are more symptoms with IPF than what is documented vs Esbriet use. My mom has had a runny nose for years. She uses nasal sprays prescribed by her allergist (ENT). That moderately helped and with CPAP at night has seems to help with her thick mucous cough ( IPF usually noted in to cause dry cough). In additional her chest CT shows bronchiectasis with suspect that IPF can effect the bronchi as well.
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My mom has had IPF for about 7 yrs progressively and recently dramatic weight loss. She takes Esbriet, ( she has taken full dose)I’ve always been suspicious of it’s side effects, especially with appetite. However, as IPF progresses her pulmonologist said her metabolism is much faster because her oxygen demand and how this effects her bodies needs. Thus burns calories at a much higher rate causing weight loss. Soon after diagnosis and taking this med she has had an increased distaste for things she used to like to eat and fatigue even worse than the shortness of breath. Take care, and seek out resources to get the assistance you need!
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Bewildering, frightening, unpredictable
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Oh and sucky.
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Yes my mom just started lexapro. She is not an anxious person but has experienced episodes especially prior to showering. I push and encourage her while helping her. I believe part of the cause is she was trying to do this task without her oxygen which she cannot tolerate being off of at this point.
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Sounds like my mom. I’m sorry to hear your struggle, but it seems as though you are going to need oxygen at least when you are exerting yourself. It was a difficult transition for her,however she knows she needs to use oxygen most of the time now.
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welcome! I’m a nurse and understand that oxygen is drying. However your comment is relatable to my moms symptoms. She is prescribed a spray nasal decongestant from an ENT and thinks it is helping ( it’s only been about a week). Plus she started CPAP at night and I witnessed her having less coughing with the thick sputum.. we’ll see given the good and bad days with IPF. I hope this helps as possible options.
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I have encouraged my mom to drink more water but she so stubborn and has never been a water drinker ( she likes Diet Coke). She said it helps when she puts on her oxygen when she has a coughing spell. Also she started using a CPAP at night. She is not sure if it helps her overall symptoms but it’s only been a short time. She also has had post nasal drip and congestion. She recently was seen by an ENT MD who prescribed her a nasal spray to start. Not sure if those symptoms are related to IPF. We’ll see, I just want her not to suffer.
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Thank you for sharing! There are some articles about the telomere connection. But even the article suggests needing more investigation.