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Regina Bolyard

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@gins

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  • Profile picture of Regina Bolyard

    Regina Bolyard replied to the topic IPF patient symptoms in the forum Join the Discussion: Welcome to all PF/IPF Patients 5 days ago

    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]

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    Regina Bolyard replied to the topic IPF patient symptoms in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 week, 3 days ago

    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]

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    Regina Bolyard replied to the topic Tony Winter ♥️ in the forum In Loving Memory 3 months, 2 weeks ago

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

     

    Regina

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    Regina Bolyard changed their profile picture 4 months, 3 weeks ago

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    Regina Bolyard posted an update 4 months, 3 weeks ago

    One day at a time.

  • Profile picture of Regina Bolyard

    Regina Bolyard replied to the topic Biopsy… yes or no? in the forum Upcoming Medical Appointments: Q&As 6 months, 1 week ago

    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]

  • Profile picture of Regina Bolyard

    Regina Bolyard replied to the topic Families of IPF/PF patients getting tested in the forum Join the Discussion: Welcome to all PF/IPF Patients 1 year ago

    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.

  • Profile picture of Regina Bolyard

    Regina Bolyard replied to the topic Esbriet and ulcers in the forum Esbriet (Pirfenidone) 1 year, 2 months ago

    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

  • Profile picture of Regina Bolyard

    Regina Bolyard replied to the topic Low dose of Esbriet, is it worthwhile? in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 2 months ago

    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]

  • Profile picture of Jackie Kalina

    Jackie Kalina and Profile picture of Regina BolyardRegina Bolyard are now friends 1 year, 4 months ago

  • Profile picture of Regina Bolyard

    Regina Bolyard replied to the topic Has anyone stopped taking Esbriet? in the forum Esbriet (Pirfenidone) 1 year, 4 months 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]

  • Profile picture of Regina Bolyard

    Regina Bolyard replied to the topic Taking time off from esbriet in the forum Esbriet (Pirfenidone) 1 year, 5 months ago

    @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]

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    Regina Bolyard replied to the topic COVID-19 and Me in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 1 year, 5 months 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]

  • Profile picture of Regina Bolyard

    Regina Bolyard replied to the topic Fatigue & Nausea with Esbriet in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 1 year, 5 months 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.

  • Profile picture of Regina Bolyard

    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 1 year, 6 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]

  • Profile picture of Regina Bolyard

    Regina Bolyard replied to the topic Update about Mom in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 1 year, 6 months 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.

  • Profile picture of Regina Bolyard

    Regina Bolyard posted an update 1 year, 7 months ago

    Started Esbriet after failure with Ofev.

    • Profile picture of Charlene Marshall
      Charlene Marshall replied 1 year, 7 months ago

      Hi @gins

      How are you tolerating the Esbriet so far?

  • Profile picture of Regina Bolyard

    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 1 year, 7 months ago

    @suzrbrennan,

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

     

    Regina

  • Profile picture of Regina Bolyard

    Regina Bolyard replied to the topic Food aversions & loss of appetite in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 8 months 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]

  • Profile picture of Regina Bolyard

    Regina Bolyard posted a new activity comment 1 year, 8 months 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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    • Profile picture of Mark Koziol
      Mark Koziol replied 1 year, 8 months ago

      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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