I was diagnosed with IPF in April, 2017 at Northwestern in Chicago and began OFEV in February. 2018, 150 mg twice daily. I live in SC so my Drs in Chicago recommended Drs at MUSC in Charleston and I have been seeing them every 3 month since 2018. OFEV reduced to 100mg twice daily because of side effects. MUSC pharmacy supplies my OFEV, my…

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I was diagnosed with IPF in April, 2017 and started OFEV in February, 2018. 150mg twice a day for 2 years when side effects became difficult to deal with so I went down to 100mg twice a day. I had hip replacement surgery in October 2022, followed by knee replacement surgery in June, 2023. I was able to handle OFEV until 5 months ago when I…

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I was diagnosed with IPF in April, 2017 and began taking OFEV several months later,  I started on 150mg twice daily, but after 6 month, the side effects were severe enough that the doctors agreed to reduce the dose to 100mg/twice daily.  I have been doing well, minor side effects, and my disease has not progressed.  My PFT and 6 minute walk… Read more

I was diagnosed in 2017 and began taking Ofev 150 twice daily on the advice of my Doctors.  They suggested Ofev since I live in the South and spend a lot of time outside, playing golf, walking, etc.  I experienced side effects of diarrhea and nausea that were just short of severe.  My dose was reduced to 100 twice a day and although I still… Read more

I was diagnosed with IPF in May, 2017 and began taking OFEV in February of 2018, 150 twice a day.  Took it for almost a year, but my dosage was reduced to 100 because of the side effects.  Now my side effects are minimal and I can deal with them. My PFTs are normal, and I am not on oxygen.  I try to walk 2 miles 4 times a week and I still play… Read more

Hey, I use Healthwell Foundation to help pay for my Ofev.  I live in Aiken, South Carolina and my Drs are at MUSC in Charleston.  The cost of Ofev is $10, 583.44 a month and my drug plan pays $10,054.27. Healthwell pays the remaining $529.17.  I applied in December, 2018 for this year, I have used this foundation for 2 1/2 years.  I have a… Read more

Hey @marianne, I get a grant from Healthwell that covers the cost of my copay.  Perhaps you could apply to them. If you want, I can send you the information.  You have to give them your monthly income, just yours, if it is too much, you will not qualify.  There is financial help out there.

jacki

Hey Denny, I was going through the pre-testing for the trial and the release paperwork they sent me stated the side effects of headache and cough, so I asked my Dr and he confirmed what I had read.  Now having said that,  all my Drs in Charleston are very big on this study.

 

Hey @marianne , I am going back to the Speciality Pharmacy for your OFEV.  I use the CVS Speciality Pharmacy and they send it to a local CVS at Target and I pick it up there, it is very convenient.  My insurance pays most of the cost and I  got a grant that covers the rest of the cost, so I am fortunate.  I do not have to pay for this drug,… Read more

Good Morning, I know they are doing the GLPG 1690 at Northwestern in Chicago and MUSC in Charleston, SC and are looking for volunteers at both sites.  I was contacted by both sites and asked to join the study.  I can assume there are others around the country.  There are side effects with this drug, cough and headaches are the most common… Read more

Good morning, I live in SC and have been on OFEV for over a year now, started off on 150 twice daily and then my Drs lowered my dosage to 100 twice daily due to side effects.  I got assistance with the cost of the drug through Open Doors, they put me in touch with two foundations that give grants to folks who need assistance with drug costs.  Mt… Read more

Well I saw my Gastroenterologist yesterday and all is good, no bleeding in my stomach or intestines so I am back on OFEV.  They have no idea what happened, could be one of 50 things, but I am just relieved things are normal, or at least my new normal!   Been doing well, New Years Resolution was to walk at least 2 miles at least 3 times a week,… Read more

Good morning, I have not been on this site for a while.  I had a new OFEV issue on Sunday. I experienced a constant pain in my stomach around 11:00 am and it got progressively worse as the day wore on, until the pain got so intense I contemplated going to the ER.  I took antacids that did not seem to work.  We did not go to the ER, it was… Read more

Hey Charlene, thank you for all you do on this site.  When I cannot sleep, waking up at 3:00 or 3:30, I basically do nothing.  I try to turn off my thoughts, think of a black wall, and sometimes that works.  I am a Guardian ad Litem and if there is something going on in one of my cases that will keep me awake, I worry about  y kids or… Read more

I have posted before but not for a while.  I was diagnosed in April, 2016 and began OFEV in February, 2017.  My disease has not progressed, all my tests are normal, except for the CT scan.  I am not on oxygen and do not cough, so I appear healthy to all my friends.  Some even ask me if I still have IPF!  There are two other gentlemen who live in… Read more

I too suffer from acid reflux, have for years but is much worse since my diagnosis of IPF. I now get violently ill at times.  I take 40mg of perscription Omeprazole before I go to bed at the direction of my Dr.  Sometimes we eat later and then I may have a problem.  We have an elevated bed and it does help.  Of course, like the rest of you, I… Read more

Thanks, Zoe.  Glad you found out what might be going on with your mom.  Because I have been taking OFEV I have my blood tested every 3 months and so far all were normal.  But having said that, I have had itchy skin for a long time, especially bad in winter when I lived in Chicago.  Never could get an answer until now.   The Curel does work… Read more

I have have had itchy skin for a long time, befor my diagnosis, and I live in South Carolina where it is hot and humid for long periods of time.  My dermatologist recommended a product that has helped so much.  It is called Curel, Hydratherapy wet skin moisturizer.  You apply it after your shower on wet skin and pat dry.  It works!!  I get it on… Read more

My doctors urged me to get both the flu and pneumonia shots, and I did get the pneumonia shot back in 2007, before my IPF diagnoses and I got my flu shot 2 weeks ago.  I also got the 2 shot shingles shot, on advice of my doctors.  I want to protect myself against any and everything I can.  I live in South Carolina and right now there is… Read more

I had diarrhea with OFEV, was on 150 twice daily and basically was unable to leave the house until  early afternoonl, I did take Imodium, that caused constipation and so I had another issue.  My dr said Imodium is strong medicine, take 1/2 pill, that worked.  But the diarrhea continued.  My Drs took me off OFEV for 4 days, and lowered my… Read more

Hey Dick, I am over 65 so I have a perscription drug insurance, but the support group called Open Doors that my doctors put me in touch with worked with me.  My insurance covered most of the cost but I was given the name of two foundations that help people off set the cost of drugs,  the one I used is Health Well Foundation, phone #… Read more

I was diagnosed with IPF in May, 2017 and began takin OFEV in February of 2018, and had only mild side effects for the first 2 months.  Then I developed   nausea,  diarrhea and at times secere vomiting.  I took pills for the nausea and diarrhea which helped, but then I was  constipated so i had to deal with that.  I was pretty much… Read more