Carol Richards
Forum Replies Created
-
Hi, I could not tolerate OFEV. I tried for over a year. I am now on Esbriet. I, too, became extremely fatigued. I spoke to the pharmacist from the specialty pharmacy that I get the Esbriet from, and he told me that it appears from the study information that a lower dose of Esbriet may be just as helpful as the full 801, 3x’s a day. I have gone to 7 (267) a day. Still tired in the morning, but so much better than before. I am trying to get on the Galactic 1 clinical trial through the Cleveland Clinic, and was told I had to be stable with the meds I am taking. So I have not reduced the amount of my Esbriet any more. I would like to. It is very interesting that in Japan that is the norm. If for some reason I am not accepted on the clinical trial, I intend to reduce the Esbriet by one more pill (267). Thank you all for the great information on this site!
-
Believe me, I am not too kind. You are both priceless! Thank you for responding. Take care!
-
First, I want to thank Charlene and Mark, our keymasters, for all their help and support on this forum! I enrolled to be a participant in the GPLG study back in March. Covid made U of M close enrollment before they could consider me. When it opened again in August, I was told that the company was no longer enrolling people who were taking OFEV or Esbriet. They are only taking those that are not on a “Standard of Care” treatment. I was really looking forward to participating.
On the subject of side effects of OFEV, I have pretty much tried everything I can to overcome the debilitating diarrhea. I have seen a Gastroenterologist, a Nutritionist, and contacted OFEV’s very helpful 24/7 helpline. I have had tests to make sure there is nothing else going on, gone on a strict FODMAP diet, changed my dosage to 1, 150 mg pill, and avoid any dairy at all. I still have problems, but I can function better. I also have noticed hair loss, and dental sensitivity. Until I read about those side effects on this forum, I did not connect the dots. Oh joy. I am just hoping for some help for all of us, and I am more than willing to be on a clinical trial. We need to help each other. Diagnosed in 10/ 2019, and I am 69.