Frank Loeffler
Forum Replies Created
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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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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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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 progress of IPF to the point that my breathing tests have not changed at all. I still maintain my prior levels of activity including but not limited to aggressive walking and weather permitting (summer) swimming. An interesting point is that my early diagnosis was from a high resolution CAT and my pulmonologist strongly suggested NO FURTHER RADIOLOGY STUDIES for my protection.
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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 healing process has been tardy.
Wondering if anyone else has noted these indicators?
Thanks
Fraank
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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 administration. This maybe a venue may be the shorter route. My question of the pulmonologist office is not yet answered.
On the news and on the ground info is that the larger number of vaccine admins will be done by CVS and Walgreens. As a 1b classification, I asked if I could go on their waiting list. They have never heard of a waiting list.
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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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@pbesio
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 hopeful to continue this Rx. Hopefully the Belgium Rx company will provide information and advice.
Personally I have little to report. All of my tests have be stable since 4/19 and I literally do not know how either Rx has impacted me. I am very thankful that to date I personally have no adverse breathing issues. For about six weeks starting last March I had diarrhea issues but could not link directly to either Rx (Understanding that the trial Rx may have been placebo). I do exercise and walk (2-5 miles) daily with no significant change in my breathing or other sensations.
Pete, at this point, since each individual is different, I am not sure about what to expect in the future. I am 75 years of age and do tend to my office away from the home daily which may help with sanity.
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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) and he advised that it should not be an issue. I did not ask about distilled spirits….has any reader asked that distinguishing question of their medical provider. I did ask the interviewer from Ofev and was advised that she did not see anything in the literature which is not a scientific professional answer.
In my mind the issue of my liver still is very open for understanding.