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John Penn replied to the topic Protecting Your Lungs From Cold Temperatures in the forum Canadians Living with Pulmonary Fibrosis 2 months, 1 week ago
I will use a mask and it helps tremendously. I walk my dog at times when it is in the teens and 20s and having mouth and nose covered really does help.
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John Penn replied to the topic Life span in the forum Diagnosis Information and General Questions 3 months, 1 week ago
I was diagnosed in October of 2017 and began takings esbriet in November. I have not had any significant decrease in my lung function and continue to be active. I do have to deal with fatigue and coughing but overall been manageable. Last PFT there was actually a slight improvement over the previous test. I too was. Dry concerned when the…[Read more]
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John Penn replied to the topic How to Decide When to Stop Working with Pulmonary Fibrosis. in the forum Employment & Pulmonary Fibrosis 3 months, 1 week ago
I was diagnosed in October of 2017. I continued to work until February of 2020 at age 65. Though I am still fairly active stamina was getting worse as was my cough having to use supplemental oxygen occasionally. Without knowing if I would face a rapid decline or any exacerbation my decision to retire was based on spending quality time with my w…[Read more]
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John Penn replied to the topic Is My Disease Worsening? in the forum Living with Pulmonary Fibrosis: 50+ 7 months ago
I was diagnosed in November of 2017. My most recent CT scan indicated little to no changes since the initial diagnosis. Hat I have noticed over the past year is a worsening cough, particularly in the morning, and when taking a steamy shower. Mornings cough spells can last sometimes an hour or more. Once I get over them I am ok thou…[Read more]
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John Penn replied to the topic Alcohol & Anti-Fibrotics (OFEV & Esbriet) in the forum Esbriet (Pirfenidone) 1 year, 3 months ago
I have been on Esbriet for 4 years. I have maybe 2-3 drinks a month…sometimes a beer, sometimes a rum and coke. Thus far all of my liver panels have been normal. Like most things individuals metabolize things differently so my experience may not be the same as others. Be safe and wishing all of you the best
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John Penn replied to the topic Fibrosis and Esbriet in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 5 months ago
I have been on Esbriet for over 3 years. First 2years on the 267 dosage 9 per day. Last year switched to 801 and have not had any issues. Yes, I do need to watch the sun exposure and experience some digestive issues but all are minor. Hope you can get through this.
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John Penn replied to the topic Skincare on Immunosuppressants in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year, 8 months ago
I have been on Esbriet for 3 1/2 years and notice my skin is much more sensitive to sun exposure and the elasticity appears to be much worse. Seem to get many little bumps and small rashes. I have had a Basel carcinoma removed a few years ago and am seeing a dermatologist now.
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John Penn replied to the topic how long can you take Esbriet? in the forum Esbriet (Pirfenidone) 2 years, 1 month ago
Been taking Esbriet since November 2017. I struggle with the fatigue and have to take medication for the heart burn that can get severe. I find that very cold air is tough on my breathing so I try to stay in the house when it is below 30. I have no other side effect and will be having my liver panel in February. Due to Covid I have not…[Read more]
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John Penn replied to the topic Taking time off from esbriet in the forum Esbriet (Pirfenidone) 2 years, 1 month ago
I would also agree with trying the reduced dosage to see if that helps before just stopping. I am so fortunate that after 3 years on Esbriet I have had no real side effects. Yes I get fatigue but other than that all is good…,best of luck..
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John Penn became a registered member 2 years, 8 months ago
Hello John, welcome and thank you for joining your pulmonary fibrosis forum.