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Jackie Kalina and
Regina Bolyard are now friends 2 days ago
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Regina Bolyard replied to the topic Has anyone stopped taking Esbriet? in the forum Esbriet (Pirfenidone) 6 days ago
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]
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Regina Bolyard replied to the topic Taking time off from esbriet in the forum Esbriet (Pirfenidone) 1 month ago
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]
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Regina Bolyard replied to the topic COVID-19 and Me in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 1 month, 1 week ago
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]
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Regina Bolyard replied to the topic Fatigue & Nausea with Esbriet in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 1 month, 2 weeks ago
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.
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Regina Bolyard replied to the topic How does taking Prednisone help IPF patients in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months ago
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]
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Regina Bolyard replied to the topic Update about Mom in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 2 months, 3 weeks ago
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.
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Regina Bolyard posted an update 2 months, 4 weeks ago
Started Esbriet after failure with Ofev.
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Regina Bolyard replied to the topic Making Exercise Easier: Tips From a Pulmonary Fibrosis Patient in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 months, 2 weeks ago
Thanks for sharing your morning routine; I have hip issues and these sound like they might really help!
Regina
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Regina Bolyard replied to the topic Food aversions & loss of appetite in the forum Diagnosis Information and General Questions 4 months, 2 weeks ago
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]
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Regina Bolyard posted a new activity comment 4 months, 3 weeks ago
Thanks Mark. So far I am tolerating the Ofev well. The first dose made me queasy, but that hasn’t happened since. Dr will probably increase my dose if liver function remains good after a couple of months.
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Regina Bolyard's profile was updated 4 months, 3 weeks ago
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Regina Bolyard posted an update 4 months, 3 weeks ago
Dx is IPF. I started Ofev treatment 8/31/2020
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I am happy you have received your diagnosis. At least now they can properly treat you. I am sorry it had to be IPF. I hope you off to good start with tolerating the Ofev. Good luck and if you have any questions please feel free to ask. Mark.
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Thanks Mark. So far I am tolerating the Ofev well. The first dose made me queasy, but that hasn’t happened since. Dr will probably increase my dose if liver function remains good after a couple of months.
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Ok that’s a good start. Remember to eat a small meal when taking your meds. I ate a banana with my morning dosage along with usually a small breakfast. Take care, Mark.
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Regina Bolyard replied to the topic Be Wary of Eating the Right Foods When Eating Healthy in the forum Living with Pulmonary Fibrosis: 50+ 5 months ago
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]
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Regina Bolyard joined the group
Research and Development 5 months, 1 week ago
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Regina Bolyard replied to the topic Diagnosis Questions in the forum Diagnosis Information and General Questions 5 months, 2 weeks ago
@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]
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Regina Bolyard replied to the topic Diagnosis Questions in the forum Diagnosis Information and General Questions 5 months, 2 weeks ago
@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]
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Regina Bolyard changed their profile picture 5 months, 3 weeks ago
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Regina Bolyard posted an update 5 months, 3 weeks ago
Had VATS surgery to obtain lung biopsy specimens on 7/29/2020. I was discharged from the hospital on 7/31. Here’s hoping this leads to appropriate and effective therapy.
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Regina Bolyard replied to the topic Diagnosis Questions in the forum Diagnosis Information and General Questions 5 months, 3 weeks ago
Hi Virginia,
I’m so sorry for you not having support at work. In addition to having your livelihood threatened, it must feel like you are being devalued. I want you to know how much I appreciate nurses. You are the backbone of patient care and the comforting attention you give is critical to our well being and recovery.
Like Bengt, I also w…[Read more]
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