1. < Lung Health

Prescribed Ofev, anyone have experience with this drug?

Posted by ktgirl @ktgirl, Apr 14, 2023

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!
Thanks

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chickytina | @chickytina | Apr 15, 2023

I was on Ofev for a little a year before my TP (due to issues with my insurance company not covering it at all). I didn't really mind the side effects from the medication. The main side effect that I had was the diarrhea. Since I was able to control it, it didn't really bother me.
I understand about not being able to walk to much. However, keep walking as much as possible. Even when needing to use the oxygen, it is better to walk as much as possible.
It took me over two years to get back to work (partially because after my TP, I am still not able to take public transportation and I needed to find another job rather than take the 1 1/2 commute). I wish you luck.

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1 reply
ktgirl | @ktgirl | Apr 15, 2023
In reply to @chickytina "I was on Ofev for a little a year before my TP (due to issues with..." + (show)
@chickytina

I was on Ofev for a little a year before my TP (due to issues with my insurance company not covering it at all). I didn't really mind the side effects from the medication. The main side effect that I had was the diarrhea. Since I was able to control it, it didn't really bother me.
I understand about not being able to walk to much. However, keep walking as much as possible. Even when needing to use the oxygen, it is better to walk as much as possible.
It took me over two years to get back to work (partially because after my TP, I am still not able to take public transportation and I needed to find another job rather than take the 1 1/2 commute). I wish you luck.

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Sorry, I'm not sure what you mean by TP? I feel like I need to be over this pneumonia and my RA factor is through the roof because I've been off my Orencia since last July. I was scheduled for knee replacement and had a wound on my thumb that wouldn't heal. I just started Actemra before I got the pneumonia so I had to stop that too. I don't want to start another drug until I'm feeling a bit better.
Thanks for responding.
Carol

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chickytina | @chickytina | Apr 15, 2023

I had a bilateral lung transplant (TP). However, when I started my downward spiral I contracted COVID with pneumonia. I was able to get over the COVID within a month, but needed to be hospitalized to get over the pneumonia after 2 months. I don't remember all of the medications that I was on. However, I was on Ofev, regular nebulizer with two types of medication and then a special nebulizer for Tyvso. The side effects for 3 of my medications was diarrhea, but it didn't really bother me much. The medications differ I think because I had pulmonary fibrosis.

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1 reply
ktgirl | @ktgirl | Apr 15, 2023
In reply to @chickytina "I had a bilateral lung transplant (TP). However, when I started my downward spiral I contracted..." + (show)
@chickytina

I had a bilateral lung transplant (TP). However, when I started my downward spiral I contracted COVID with pneumonia. I was able to get over the COVID within a month, but needed to be hospitalized to get over the pneumonia after 2 months. I don't remember all of the medications that I was on. However, I was on Ofev, regular nebulizer with two types of medication and then a special nebulizer for Tyvso. The side effects for 3 of my medications was diarrhea, but it didn't really bother me much. The medications differ I think because I had pulmonary fibrosis.

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Wow! You've had quite an ordeal. So did you get Covid and pneumonia and pulmonary fibrosis after the lung transplant?
I don't understand why I can't get over this extreme tiredness and weakness. I'm exhausted all the time.

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chickytina | @chickytina | Apr 15, 2023

No, I had pulmonary fibrosis was diagnosed July 2019. Then contracted COVID with pneumonia in November 2020 (right before vaccinations were available). Also, had pneumothorax in May 2021. Then had my TP May 2022. Now my lungs are great (usually at around 120-130% expected functionality).
I understand how it is, but push yourself to do as much as possible and don't worry if you have to do it on oxygen. It's better to get up and do things for yourself. Get yourself a glass of water when you want one. Do whatever you can. It's important to keep moving. I got so bad that I couldn't even wash myself. You want to try to avoid that as much as possible.

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1 reply
ktgirl | @ktgirl | Apr 15, 2023
In reply to @chickytina "No, I had pulmonary fibrosis was diagnosed July 2019. Then contracted COVID with pneumonia in November..." + (show)
@chickytina

No, I had pulmonary fibrosis was diagnosed July 2019. Then contracted COVID with pneumonia in November 2020 (right before vaccinations were available). Also, had pneumothorax in May 2021. Then had my TP May 2022. Now my lungs are great (usually at around 120-130% expected functionality).
I understand how it is, but push yourself to do as much as possible and don't worry if you have to do it on oxygen. It's better to get up and do things for yourself. Get yourself a glass of water when you want one. Do whatever you can. It's important to keep moving. I got so bad that I couldn't even wash myself. You want to try to avoid that as much as possible.

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That's such good news for you!! It's so good to hear positive results ! I am glad you have written back. I've been searching lots of stuff on pneumonia and they say to rest! I see your point about moving. You've given me encouragement to push myself more. Thank you!
Carol

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chickytina | @chickytina | Apr 15, 2023

It's good to rest when you need to, but you also need to get up and move. I have such a new lease on life that I am so thankful for that I try to encourage others to live their best lives. I will pray for you.

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1 reply
ktgirl | @ktgirl | Apr 15, 2023
In reply to @chickytina "It's good to rest when you need to, but you also need to get up and..." + (show)
@chickytina

It's good to rest when you need to, but you also need to get up and move. I have such a new lease on life that I am so thankful for that I try to encourage others to live their best lives. I will pray for you.

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Thank you for praying. I really appreciate that!! I just have one more question. I'm wondering about my blood oxygen levels. I have an Apple Watch and my oxygen level is staying above 90 and sometimes up to 100. So I'm wondering why I'm so short of breath. The pulmonologist I saw at Mayo in Rochester said I didn't need oxygen.

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chickytina | @chickytina | Apr 15, 2023

That's great (your oxygen levels). My oxygen was around 80 pretty much constantly dipping lower when walking or doing things when they put me on oxygen. It went down to the 30s on 6 liters of oxygen before I was hospitalized to be put on 30 liters before my TP.
However, your shortness of breath could be because of the pneumonia. I would ask the pulmonologist about it. My doctor has told me that you have to be your own advocate and don't stop until you get the answers you need.

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1 reply
ktgirl | @ktgirl | Apr 15, 2023
In reply to @chickytina "That's great (your oxygen levels). My oxygen was around 80 pretty much constantly dipping lower when..." + (show)
@chickytina

That's great (your oxygen levels). My oxygen was around 80 pretty much constantly dipping lower when walking or doing things when they put me on oxygen. It went down to the 30s on 6 liters of oxygen before I was hospitalized to be put on 30 liters before my TP.
However, your shortness of breath could be because of the pneumonia. I would ask the pulmonologist about it. My doctor has told me that you have to be your own advocate and don't stop until you get the answers you need.

Jump to this post

I totally agree. I can't get an answer from anyone. I live in a rural area and there isn't much to pick from as far as doctors. That's why I try to get to Mayo Clinic when I have something this bad.
Thanks again for your help!

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