Regina Bolyard

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]

Beginning a low carbohydrate diet like the one you described will usually result in the loss of body fluid. This often results in loss of electrolytes as well. This happened to me when I first adopted a low carb lifestyle. I now supplement with unrefined salt, magnesium, and potassium. I havent had a problem in years since supplementing with these…[Read more]

@pbessio ,

My biopsy was pretty uneventful too. The chest tube grossed out my kids, and I had fun with that 😆. But honestly, didn’t even feel it. Pain afterward was far less than I had been led to expect. I had surgery at noon on Wednesday and was discharged at 10 a.m. on Friday. The worst part of the experience was the hospital bed. I c…[Read more]

@jross ,

In March the FDA approved Ofev to treat patients with chronic, progressive fibrosing interstitial lung diseases. These include Hypersensitivity Pneumonitis, Autoimmune ILDs, and NSIP.

It may be too soon to know whether it will help in these diseases, but I would sure be willing to give it a try. I had a surgical biopsy last Wednesday…[Read more]