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Frank Loeffler replied to the topic Vaccinated PF people and COVID 19 in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 1 year, 5 months ago
Thanks for the info….I am not sure that across the country there is uniformity as the CDC guidelines do not include IPF
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Frank Loeffler replied to the topic Vaccinated PF people and COVID 19 in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 1 year, 5 months ago
Based on the questions asked at dispensing pharmacies, is IPF that form of life threatening illness giving us qualification for the booster. The questions I saw did not relate to IPF
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Frank Loeffler started the topic GLPG1990 Gilead clinical trial in the forum Clinical Trials 1 year, 12 months ago
Since November 2019 I have been associated as a patient with the Gilead clinical trial for patients who were also taking OFEV 150mg 2X daily.
Since starting on the trial literally a year and a quarter ago, I have virtually no adverse changes in any aspect of my health conditions. Other than a few limited digestive side effects, I have had…[Read more]
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Frank Loeffler replied to the topic Ofev Users can Safely take Ofev on a Long Term Basis in the forum Ofev (Nintedanib) 2 years ago
My year and three quarters since my IPF diagnosis and OFEV treatment has literally left me with no change. I started a common script of 100mg 2x daily to test my side effect tolerance and then 150mg 2x daily with little side effects. My pulmonologist at University of Kansas Medical Center advised that OFEV may have significantly slowed the p…[Read more]
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Frank Loeffler replied to the topic Ofev Users can Safely take Ofev on a Long Term Basis in the forum Ofev (Nintedanib) 2 years ago
Having now been on OFEV for almost two years plus a clinical study medication termed as “Galpagos” for over a year, in the past 7 months I have noted both a slowing of my hair and nail growth as well as a slowing of healing of minor cuts and burns. Previously my healing was very prompt and although the clotting and scabbing is prompt, the…[Read more]
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Frank Loeffler replied to the topic Covid vaccine in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 2 years, 1 month ago
As a Missouri resident I contacted the Covid unit at Missouri Health Dept. They had no useful information but suggested that I call Kansas City Health Dept. A very gracious supervisor said that she had no information but asked me to call her back.
So, my next unanswered question is: Can my pulmonologist have any input at the hospital level of…[Read more]
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Frank Loeffler replied to the topic Diet and Our Immune System in the forum Healthy Recipe Sharing 2 years, 1 month ago
If I am properly reading the article on diet and IPF, it appears that we should restrict our animal based proteins low levels of Methionine. I do wonder if there is any estimate of the Methionine daily intake should max out at as a max goal to stay under?
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Frank Loeffler replied to the topic GLPG1690 Clinical Trial in the forum Clinical Trials 2 years, 3 months ago
Pete
I was diagnosed IPF 4/19 and immediately started OFEV. In November I was offered the trial GLPG1690-CL-304 so in a month+ it will be a year on both. I do strictly follow the routine of taking each drug and designated intervals with literally no exception whatsoever. If the trial Rx is designed to work in conjunction with OFEV, I am ho…[Read more]
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Frank Loeffler replied to the topic Alcohol & Anti-Fibrotics (OFEV & Esbriet) in the forum Esbriet (Pirfenidone) 2 years, 11 months ago
I guess the real question is associated with elevated potential of liver issues with Ofev or Esbriet plus other which could be Tylenol or alcohol. There has not been any meaningful dialogue on these issues. In my specific case I did ask my treating physician who asked how much alcohol and the type that I consume (3-5 glasses of wine per week) a…[Read more]
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Frank Loeffler became a registered member 2 years, 11 months ago
Hello Frank, I notice you are from city that has the current Super Bowl Champions. Congrats! Welcome to your pulmonary fibrosis forum. Thank you for joining.