Greg Ford
Forum Replies Created
-
I was diagnosed 2 years ago. I am now 66. Took Esbriet for one month and quit. I started out building up stamina on an elliptical after I got off the Esbriet. Exercising for 30 minutes at a low tension. After about 6 months I was up to 60 minutes a day. I do not overextend myself just a steady work out at a comfortable pace. I now am up to six miles in about 60 minutes. I try to exercise at least every other day but do not always get a chance to do so. I limit any alcoholic drinks to just one a day. I do not eat anything 3 hours before I go to bed. Two days ago, I had my lung function tests and my results are the same as I was 2 years ago. I have also lost over 30 pounds. If my children or the grandkids are sick they are not supposed to visit until they are well. My exercise program is not a cure, but it has kept me on a plateau I believe.
-
My pulmonologist currently has two ipf patients who were diagnosed 10 years ago. The longest patient case he has ever had is 17 years. I have interpreted his guidance to believe that the disease acts differently in different people. It is also dependent upon how well you take care of yourself and any other ailments you might have. I myself was just diagnosed last August 2020.
-
Take a look at IQ air. They have several that fit various rooms. I have IPF and allergies. Long before diagnosed with IPF, to control my allergies at night I put an IQ air purifier in my bedroom. Noticed an allergy difference within a week. Replacement filters are pricy but are only needed about once a year. Have had mine for 4 or more years and still love it. They have difference speeds on air flow which determines you filters effective life and the noise you hear at night.
Greg Ford
-
The side effects I had with Esbriet were spells of diarrhea and a complete lack of energy. I also do a lot of gardening and try to spend a lot of time outdoors. The fear of a reaction from the sun with Esbriet had me slathering myself with sunscreen a couple of times a day. I started researching the benefits shown in the Esbriet trials in the improvement of air volume between the test group and the control group. Yes, there is a benefit, but I could never get a clear answer on how much the benefit was to my total lung volume. I went on a deep dive on the internet, and I finally got to the European approval documents on Esbriet. Their documentation stated the benefit was only a 1% improvement from the control group and the approval was based upon there being no other drugs available at the time to combat the disease. I was acting very poorly to Esbriet and decided the 1% benefit was not worth the quality-of-life issues I was experiencing. I also was shocked by the pre-insurance cost of over $21,000 per month for the full dose. If I live 6 months or 1 year less by not taking Esbriet I am willing to accept it.