Regina Bolyard

I stopped taking Ofev because I developed significantly high blood pressure while on it. BP returned to baseline after discontinuing it.

Both of my lungs are scarred about equally. My cough is more productive early in the day. By late afternoon I usually have a dry barking cough with little to no mucus. I also experience stabbing pains. Having bronchiectasis (which I do), causes more mucus production. I also have asthmatic symptoms along with the IPF. My airways become inflamed…[Read more]

Hi Amy,

My cough also started out dry….about 20 years ago. I was diagnosed with IPF after VATS and MDD about two years ago. I have traction bronchiectasis too, and my cough has gotten more productive as time passes. I have found that staying very well hydrated keeps sticky plugs from developing. Maybe drinking more water and avoiding things w…[Read more]

I feel for you, and I’m sorry for your loss.

Regina

Why not get a second opinion? It may be that you don’t present with all the classic features of IPF. Have you asked your doctor exactly why they want surgical biopsy? I will share my experience as an example:

Honeycombing was not visible on my HRCT and I had an atypical amount of upper lung involvement. I also had a history of environmental e…[Read more]

Are any of you aware that 23 & Me is doing genetic research into IPF? As of 2 months ago they were hoping to recruit another  1000 volunteers. The testing is free if you qualify as a participant.

Hi Pete,

The nurse from Genentech told me that it is unnecessary to spread doses out evenly. She told me that I only need to keep them at least 4 hours apart and take with food.

I hope this helps.

Regina

This is a really great question. I will be starting back on Esbriet tomorrow after being off treatment for several weeks. We were trying to determine if I was having side effects due to Esbriet or another new medication. When I discontinued Esbriet most of my issues resolved.

I learned from genetic testing that I have a CYP genetic variant that…[Read more]

I have stopped taking Esbriet. I was having some really unusual side effects. I started taking prednisone right around the same time I started Esbriet though, so some of the problems may be the prednisone or the combination of the two. I want to give it another go and see if there’s a repeat of the issues. I never did reach full dose. I got as f…[Read more]

@davidaswain

While on Esbriet I experienced tingling and throbbing in my fingers and toes and to a lesser extent, my feet. I’ve been on a temporary break from Esbriet (doctor’s decision) for about a week while we figure out what medication  is causing other issues. Since about 48 hours off Esbriet the sensations I described stopped. They were…[Read more]

Mark,

I’m glad to know that you and your wife are doing well after having COVID.  Since starting on prednisone I have been more anxious about being inadvertently infected with the virus. I acknowledge the need for continued vigilance but it is good to know that a body on immunosuppressants can still mount an effective defense.

Thanks for sh…[Read more]

I experienced nausea the first few days on Esbriet. I now continue to experience mild stomachache after each dose. I’m still not on the full dosage because of other, atypical side effects. I have also experienced a new level of  fatigue  since starting it that has not abated. I have only been taking it for 7 weeks.

I have IPF. I was fairly stable until 7 weeks ago when there was a fire in my building. I have been on prednisone 3 times since then. Smoke inhalation caused my cough to become very bad. We have tried various doses and titration to wean me off, but so far the coughing comes back as soon as the dose is decreased. I’m hoping this 3rd time is a c…[Read more]

My heart goes out to you. Loosing your mother is never easy. I hope you find comfort and peace knowing that her suffering is over.

@suzrbrennan,

Thanks for sharing your morning routine; I have hip issues and these sound like they might really help!

Regina

I’m curious to know how long it took to develop food aversions after beginning Ofev. So far tiredness is the only side effect that is impacting my daily routine. I still want to eat everything I had been before beginning treatment. I really have to restrain myself from over eating while I’m not feeling like moving. I put my stationary bike whe…[Read more]