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Patrick Coghlan replied to the topic abdominal cramps with Ofev in the forum Ofev (Nintedanib) 9 months, 3 weeks ago
I experienced lower abdominal cramping last night and have been keeping a list of foods that I suspect might be the cause. Since I had part of a chocolate bar yesterday I’m thinking I might have to quit this treat.
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Patrick Coghlan replied to the topic Biopsy… yes or no? in the forum Upcoming Medical Appointments: Q&As 10 months ago
I certainly have to wonder if the reflux I’ve had on and off might have been a factor, but with NSIP (my diagnosis) they don’t really know what the trigger could be, so I’m making sure that I don’t go to bed or lie down until at least 3 hours after I’ve had food, including alcohol, in case they were contributing factors.
In the mean time, I am…[Read more]
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Patrick Coghlan replied to the topic Biopsy… yes or no? in the forum Upcoming Medical Appointments: Q&As 10 months, 1 week ago
Poker is just social (2x week online) but I was finding that my chest felt a bit congested in the morning after having a few drinks the night before, so I’ve just eliminated it for now. It will give my liver a break now that it has to deal with OFEV. Going for my first blood test in 2 weeks.
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Patrick Coghlan replied to the topic Biopsy… yes or no? in the forum Upcoming Medical Appointments: Q&As 10 months, 1 week ago
I had a barium test about 30 years ago which was normal, but things could have changed. I’ve certainly had some reflux over the years and a radiologist noted I have a small hiatus hernia, which probably doesn’t help.
For now I’m cutting out snacks and and drinks after 8 p.m., which means no more Scotch at the poker table 🙁
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Patrick Coghlan replied to the topic How fast does this progress? in the forum Upcoming Medical Appointments: Q&As 10 months, 1 week ago
You will probably have a PFT (pulmonary function test) which determines your lung capacity as a %.
Anything above 70% is generally good. The test is performed at regular intervals to determine if you are stable or if you may require medication.
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Patrick Coghlan replied to the topic Biopsy… yes or no? in the forum Upcoming Medical Appointments: Q&As 10 months, 2 weeks ago
@lmacguire I’ve been focused on this and other posts of yours, especially how your numbers have been stable now that you’re being treated for GERD.
I have had occasional mild heartburn at bedtime, but usually just took a bit of Pepto and never thought much about it. I didn’t even mention it to the pulmonologist, but now you have me thinking. I…[Read more]
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Patrick Coghlan replied to the topic Newly diagnosed UIP OFEV advice in the forum Diagnosis Information and General Questions 10 months, 2 weeks ago
@rachel-norene I guess that includes hamburgers cooked on the BBQ?
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Patrick Coghlan replied to the topic Coping in the forum Join the Discussion: Welcome to all PF/IPF Patients 10 months, 2 weeks ago
@steve-dragoo Yes, I’m thinking it may be time to refrain from processed meats, bacon anyway.
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Patrick Coghlan replied to the topic Newly diagnosed UIP OFEV advice in the forum Diagnosis Information and General Questions 10 months, 2 weeks ago
I would suggest you undergo a PFT (pulmonary function test), which will provide a baseline number for your total lung capacity.
Initially, my baseline was 72% (of expected?) and my pulmonologist said I had mild scarring and that he would just continue to monitor. A couple of years later I had an exacerbation and dropped into the 60-range, so…[Read more]
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Patrick Coghlan replied to the topic Coping in the forum Join the Discussion: Welcome to all PF/IPF Patients 10 months, 2 weeks ago
What types of protein do you find works well? An egg with breakfast? A PB sandwich? Yogurt?
What types to avoid? Bacon (love it but…)? Deli meats?
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Patrick Coghlan replied to the topic How are long-term (4+ years) OFEV users doing? in the forum Ofev (Nintedanib) 10 months, 2 weeks ago
There are some useful graphs in this IPF study.
Both drugs seem to add several years to the average survival time for patients who survive at least 2 years. There doesn’t seem to be a significant difference in mortality during the first 2 years. I can only assume this is a result of the amount of disease progression that has occurred when a p…[Read more]
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Patrick Coghlan replied to the topic How fast does this progress? in the forum Upcoming Medical Appointments: Q&As 10 months, 3 weeks ago
Symbicort is an inhaled corticosteroid. I took it for years (decades?) when a persistent cough developed after a viral infection until the cough stopped.
There are something like 200+ types of ILD. Prednisone is used for certain types and/or certain situations including (I think) acute inflammation.
Like most of us, I’m not a doctor, but r…[Read more]
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Patrick Coghlan replied to the topic How fast does this progress? in the forum Upcoming Medical Appointments: Q&As 10 months, 3 weeks ago
It can be either. Depending on your particular disease, fibrosis thickens the walls around the air sacs and makes them less permeable to oxygen transfer.
It can also be due to inflammation/congestion. Back in the Fall I started having dyspnea (shortness of breath) and just simple exertion dropped my saturation to 88%. I had a lot of co…[Read more]
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Patrick Coghlan replied to the topic How are long-term (4+ years) OFEV users doing? in the forum Ofev (Nintedanib) 10 months, 3 weeks ago
That’s amazing to hear that your PFT numbers are very stable. Next step: reach the 10-year mark!
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Patrick Coghlan replied to the topic How are long-term (4+ years) OFEV users doing? in the forum Ofev (Nintedanib) 10 months, 3 weeks ago
That’s good to hear that people like yourself are seeing reduced progression for almost 5 years with IPF.
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Patrick Coghlan started the topic How are long-term (4+ years) OFEV users doing? in the forum Ofev (Nintedanib) 10 months, 3 weeks ago
These forums were created about 4 years ago…about the time that OFEV trials were just finishing, I believe.
I’m very interested to hear from participants with various forms of PF who’ve been on OFEV pretty much since the beginning to hear how it has helped them.
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Patrick Coghlan replied to the topic Inhaler Use for Pulmonary Fibrosis in the forum Diagnosis Information and General Questions 10 months, 3 weeks ago
For years I would get a nagging cough after any kind lung infection that dragged on for months, and would always go on Symbicort until the cough went away…sometimes for 2-3 months. I don’t even remember how long ago (10+ years) this cycle started.
In 2019, after getting the flu and a bad cough, a chest x-ray revealed some scarring. I was r…[Read more]
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Patrick Coghlan replied to the topic Nearly 40% of IPF Patients in the US Not Prescribed Esbriet or Ofev Despite Effectiveness, Study Reports in the forum Flash Briefings & Podcasts 10 months, 3 weeks ago
Things like exacerbations can certainly drop your numbers. I didn’t even know the term exacerbation last Fall when my lungs became congested for about 2 months. I just happened to have a PFT scheduled near the start of that episode and I’m sure my numbers were awful (pulmonologist wouldn’t even give them to me and said he was going to discount t…[Read more]
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Patrick Coghlan changed their profile picture 10 months, 3 weeks ago
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Patrick Coghlan replied to the topic Split Ofev doseages in the forum Ofev (Nintedanib) 10 months, 3 weeks ago
Interesting discussion. I’m about to start OFEV in a few weeks so it’s definitely something I’ll ask the pulmonologist about if I start having issues.
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