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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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So how long was he on it? I've heard the first three weeks or so are the worst. I'm hoping to go back to work and wonder if the diarrhea will make it difficult. I work part time but I'm on my feet most of the day so it's hard to get to a restroom quickly. I'm on Medicare so I'm not sure on the cost of this drug.
Thanks so much for your response.
Carol
He tried it for several months and tried a reduced dose. But sometimes women do better at handling whatever comes our way. They hate to admit it but men are usually terrible patients. He went to the Mayo in Jacksonville. And the Dr there hesitated to prescribe it because of the side effects. Also I think his pulmonary fibrosis was too advanced for the medication to do any good. He also tried Esbriet with the same side effects. I wish you the best.
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1 ReactionThanks for the info. I'm not crazy about taking it. This is the first time I've seen this pulmonologist so I don't know how much I can trust her judgment. There is only one review on her and it was awful. I saw that after I had the appointment already. I guess I'll see what happens. Thanks again for your help.
Carol
just beginning ofev, how long could it take for side effects to begin? Being very careful about diet and taking Med properly.
Thanks for any information…
Welcome, @ch47. I moved your question about Ofev to this discussion where @ktgirl @chickytina @ahoura9 @kathy22 @rntichauer @robtlhughes @wreath share their experiences.
- Prescribed Ofev, anyone have experience with this drug? https://connect.mayoclinic.org/discussion/prescribed-ofev-anyone-have-experience-with-this-drug
It's important to keep in mind that everyone reacts to drugs differently and not everyone experiences the same side effects.
How long have you been living with IPF?
Side effects can start within hours of taking it. Mostly stomach issues, but also can make you feel tired, like you desparately need a nap. Stomach issues can be greatly reduced by taking with a good amount of protein. A peanut butter sandwich, premier protein drinks, bars, etc,.. Take the protein right when you take the Ofev. Don't wait even 10 minutes .
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1 ReactionIt should also be noted that those taking OFEV, must also be
periodically monitored for liver issues. It’s a blood draw called Hepatic Function Panel, or Liver Function Panel.
My wife (who is actually the patient) recently had her results back from this, and certain components were off the charts high, and abnormal, from liver function.
She was as a consequence, paused from OFEV for one week, retested, and went to the lower dose (100mg).
Liver function improved significantly with the lower dose.
If your doctor has not ordered periodic lab tests for liver function….. then you should follow up, and discuss this with him/her.
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1 ReactionThank you, actually my husband taking Ofev. Decided to do a modified BRAT diet, to see if he can get through this first bit ok. Already have the continuing future RX’s for liver function; thank you for the heads up and how it will work if an issue.
Great idea on the protein with Meds, will start that next pill!
Any more advice from anyone would be greatly appreciated!
He was diagnosed with ILD about 5-6 months ago, and just IPF diagnosis about 3 weeks ago. Took this long to get the meds…
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1 ReactionNot sure if all replies are seen by all, but just want to thank you for advice on protein with pills. Have been doing apple slices w/PB, and also toast and PB. Will beef up the protein next pill!