Frank Loeffler

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]

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]

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]

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?

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]

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]