I have had them all with no issues. Thinking about getting a second Covid, had the first one in early September, just to make doubly sure I am fully protected. I take ofev 100 and 150 as well as jascayd 9 mg twice a day. I don’t choose to spend time in the hospital or even die from something preventable.

Very bad information about Imodium containing atropine and having the potential to kill you. Lomotil is an entirely different drug that does in fact contain atropine where as Imodium is the brand name for the drug loperamide and does NOT contain atropine and is completely safe for long term usage. I have been on it, 2 mg twice a day, for…

Read more

I noticed no difference in the side effects. Once the phase 2 trial was complete they told me that I was not on a placebo but was on the 9 mg dose. We tried the 18 mg but there were some side effects that I didn’t care for, different from Ofev side effects, so I dropped back to the 9 mg dosage. I just met with the study team today for a pft and…

Read more

I have been part of the study for about 18 months and have been taking ofev the entire time. I have not noticed any difference between my time taking ofev on its own and the time taking it in conjunction with jascayd. I have learned to manage the ofev side effects by taking loperamide 2 mg twice a day along with 2 tablespoons of Metamucil…

Read more

Vietnam veteran here. IPF diagnosis about 5 years ago but symptoms years before diagnosis. IPF not on agent orange recognized conditions but it took decades before they admitted there was a problem so who knows. The good news is that as a 100% disabled vet I get my meds for free. A month and a half of ofev cost is more than I made in my 12…

Read more

I have been on the clinical trial for the last 18 months. I was taking the drug in combination with ofev and did not tolerate the 18 mg dose very well and switched to 9 mg. I see the trial team again in December and will have questions for them regarding taking the drug on its own without ofev. I have learned to manage the ofev side effects but…

Read more

I saw in an earlier post a statement that the efficacy of OFEV is less than 40%. On its own this could be interpreted that the drug does not work well and this is misleading. In fact the following is the real efficacy of the drug: Clinical trials demonstrated that OFEV reduced the annual rate of FVC decline by about 50% and lowered the risk…

Read more

Thanks! I’m happy that you were able to avoid Vietnam. You didn’t miss a thing… Thanks also for responding with your OFEV protocol, it may very well help someone and keep them on the medication.

I have been on OFEV 4+ years and it has been a rollercoaster ride but it is disheartening when I see posts from those who are frightened about even starting the drug. I was formally diagnosed a little more than 5 years ago but in reviewing past MRI results it was noted over 10 years ago but the symptoms were so minor that the IPF was…

Read more

I had been in the study for about 18 months when in December they ended phase two and started phase three. I found out that I had been on a half dose, 9 mg per day, and was now going to start on the full dose of 18 mg per day. I had experienced no additional symptoms on the half dose but the full dose was hard on me, stomach and bowel issues…

Read more

I have been on OFEV for about 3 years now. Started at 150 mg twice a day and experienced the same symptoms as you. Switched to 100 mg for the morning dose which improved it somewhat. What has really turned it around for me is 2mg tabs of loperamide (generic Imodium) , one tab first thing in the morning and one tab at night, in combination with…

Read more

I had the same problems and switched to 100 mg in the morning and 150 mg in the evening along with 1/2 ammonium with each dose. Not perfect but certainly better and doable. I am 75 and have been on the drug almost 2 years now.