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Prescribed Ofev, anyone have experience with this drug?
I'm wondering if anyone has tried this drug. I have interstitial lung disease and am not sure if this drug is worth taking. I have lung damage from the RA and scleroderma. I saw a doctor at Mayo and she has prescribed Ofev. Sounds like a lot of side effects. Recently I had a knee replacement surgery and about a month later had shortness of breath and a cough and elevated heart rate. I went to the ER and they said I had pneumonitis and was given an antibiotic and later took a prednisone taper which helped some. About 3 weeks ago things got worse and I ended up with pneumonia. I'm having a hard time getting over this. I was given 40 mgs. of prednisone and another antibiotic. Still don't have any energy and can only walk about 30 steps and I have to sit down and catch my breath.
The knee surgery was the easy part. It went so well and thought I'd be back to work in record time. Now I'm not sure how much longer I'll need to be off.
Any suggestions would be appreciated!
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@ch47, all replies are seen by all members participating in the discussion. 🙂
Thank you!
Ofev cost me $3,000 for the first month and about $750 per month after that in the same year and then goes back to $3,000 for the first month of the next year and $750 per month for the rest of the year. I purchased one bottle for $3,000 but never took it after learning more about side effects. Also, how can this fairly new drug say it can extend life for seven or more years for those with Pulmonary Fibrosis? I was diagnosed with PF about 1 1/2 years ago and have had three breathing tests and lung scans. So far I am doing OK. Exercise is one of the best things you can do to help with your breathing issues -- even if it's only a one-mile walk or riding a stationary bike for 30 minutes. A good attitude, of course, also helps a lot.
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3 ReactionsGlad you are doing so well!!! My husband also had a hard time getting over the list of side effects…Ofev manufacturer has provided tons ( for lack of a better word) of support with direct numbers to call medical professionals for information, 24/7, and sent a pharmacist to to meet with us for several hours and went over all of the side effects, how to treat and how to avoid. So far so good! We are also paying what you are, but depending on your financial situation, there are numerous foundations that you can check, and may qualify for a grant.
Opendoors is a place to start, look it up. They will give you names and numbers if you decide to take the medication.
Also, BI Cares may pay for medicine entirely if you qualify.
Boehringer Ingleheim, Med manufacturer.
Unfortunately, we did not qualify, but you might!
Wish you well and continued good health!
Glad to see there are so many options for financial assistance because this drug is very expensive. Your time in sharing will hopefully help many! My husband opted not
to take after reading the side effects and I must honor his decisions. So happy you are having positive results! That’s encouraging to know.
Thank you! We kind of went backwards with the side effect thing…started with a modified version of the BRAT diet, can be looked up online, and then are adding things, one at a time. So far, no side effects. 🤞🙏🤞 easy to stop the one thing that causes issues if something happens. As to the more serious things, such as heart problems, called the support line, and was told that only .3% of study people had a problem, but since the number was so small, impossible to tell if it was the med or just would have happened anyway.
I encourage anyone interested in taking Ofev to research the financial help possibilities and then contact the manufacturer for more detailed info on possible side efforts.
If this can help one person, will be a blessing!
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