Rob Tyler
Forum Replies Created
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I never thought there was a time line, or a time where You need to stop taking Esbriet. I have been taking Esbriet for over three years. I had the side effects 6 months after my full daily dose, and battled them for 3 months: (reducing dose, and building back up to max once again, working threw insomnia and mood swings) The drug is working for me. No, I can’t run and jump, and hike the back country. I know Esbriet will not fix the scaring. But I am able to maintain a daily life without 02 at this time. I hope it will continue to do so until the next new drug rolls out with greater projections. I’ll get the blood work done tomorrow, regarding elevated enzymes in my liver. My biggest fear is any type of health set back, where my lungs would need to work harder for daily activities.
Wishing all the best, in their battles with the “unknown”, and keep up the fight!!!!
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Hello John; welcome to the site. I am two weeks shy from being on Esbriet for one Year. I understand Your concerns regarding side effects, and I had the same views. I did the 2 week, 3 pills a day, to 2 weeks, 6 pills a day, then the full load of 3 pills, 3 times a day. It went smooth for a couple of months …. but then I hit a wall. I had the sun reaction, insomnia, bottled up inside, etc. My Doctor cut me back to 2 pills, three times a day, and the nurses at Esbriet said “amitriptyline” should help with the insomnia and anxiety (and it did). I stayed on the 6 pills a day for 2 months, then worked my way back to the 9 pills a day ….. and has been smooth sailing since then. In regards to the sun, I use #50 sunscreen, and wear “Hanes Cool DRI” long sleeve tea shirts and a hat when in the sun. I fish a lot on the Chesapeake Bay, so the sun and I have to get along. I take my pills with food, at least 4 hours apart. I am a firm believer, the sooner You start the medicine, the better chance You will have to holding the disease to its original position. I am not on 02. It has been three years since being diagnosed, and my pulmonary test are staying stable. As stated many times, everybody handles the disease and the medication in a different manner. Good luck, stay positive!!!!