Norman Beattie
Forum Replies Created
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Garry glad to have you in the forum. Good questions.
I’m 70, diagnosed 6 years ago. Have used both OFEV and Esbriet and had the usual side effects. OFEV for a year and the diarrhea was too much so switched to Esbriet but the dizziness and feeling uncomfortable was too much so I went off both. Totally my choice but didn’t want to live with the side effects. You have to believe that the medication is working since no one can say how fast or slow the progression of fibrosis is per individual. I never forget I have IPF because I’m reminded whenever I breath hard or if the walk from parking lot to store is longer. It affects all facets of your live but it moves slowly so get longer with family and friends.Garry I hope you begin to cope with the side effects and you have just started so give it sometime. When you wake at night you have to think of something else besides your breathing to get back to sleep. You don’t get better just your coping skills do.
hang in there
norm
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I have been in both with side effects on each. OFEV was the diarrhea which restricted your social life and outside activities. Changed doses and not much better. Switched to Espriet and 9 pills a day couldn’t sit in the sun to watch grandson soccer or in our living room with the sun shining. Dizziness, nose & eyes running, feeling poorly overall. Have just gone off it and feel better already but still a little dizziness. Will be discussing with pulmonary doctor next week but never been sure whether the medications were working. Taking zinc just in case that helps. I will also be looking at getting on another trial. Always hopefully.
Have a great day
Norm -
I have been in both with side effects on each. OFEV was the diarrhea which restricted your social life and outside activities. Changed doses and not much better. Switched to Espriet and 9 pills a day couldn’t sit in the sun to watch grandson soccer or in our living room with the sun shining. Dizziness, nose & eyes running, feeling poorly overall. Have just gone off it and feel better already but still a little dizziness. Will be discussing with pulmonary doctor next week but never been sure whether the medications were working. Taking zinc just in case that helps. I will also be looking at getting on another trial. Always hopefully.
Have a great day
Norm -
Good morning Canadian here and I have had all the shots which include 2 boosters. Went to Whistler with all the family caught covid 2 days after returning in early August. Miserable for several days. Started with sore throat and then fatigue, then stuffy nose and a couple days later chest congestion. Breathing became difficult, sleep almost impossible just when you feel you should go to the hospital the chest congestion started to ease and a day and half later was much better. Diagnosed 5 yrs ago not on oxygen yet but probably should be now at least at night. There are lingering affects from covid and I do not feel as strong as I did before. Hoping you the best
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Didn’t need to respond at the time as I hadn’t contacted Covid. Now I have and feel blessed that I had all 4 shots. Most definitely do not feel as good as before Covid. Less energy and shortness of breath now.
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Charlene’s forum allows us to really describe how we feel without feeling guilty since everyone understands. So Virginia vent away, Randy get out to Washington, and Sharon thank you for striving through extreme health measures to dole out care to those who need it.
i read most of the submissions and wish you all well on the up hill battle caused by IPFNorm
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I have the same problem with second hand smoke of any kind cigarette, bbq, etc. Makes me come up short for breathing. Diagnosed in 2016 as well noticing a decline lately. Pulmonary test shows 16% less capacity from 6 months ago. Also on OFEV and diarrhea is difficult to live with.
Thanks for this blog Charlene.Norm Beattie