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Pete

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@golfpi

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    Pete replied to the topic Esbriet – Insurance approval in the forum Esbriet (Pirfenidone) 1 month, 2 weeks ago

    I did the same by calling Genentech and they reached out and helped me.

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    Pete started the topic Did you get Study drug or Placebo? in the forum Clinical Trials 2 months, 2 weeks ago

    Has anybody who has been in a clinical trial ever found out if they got the Study drug or the Placebo when the trial was completed? I have completed two trials and was told I will not be told what I was given until the trial is completely finished by everyone in the trial until sometime towards the end of 2022 and mid 2023.

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    Pete and Profile picture of Cheryl thomasCheryl thomas are now friends 3 months, 3 weeks ago

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    Pete replied to the topic When will first treatment to repair scar tissue become available to humans in the forum Join the Discussion: Welcome to all PF/IPF Patients 5 months, 3 weeks ago

    I agree Pat, I don’t see progress being made in humans, only in mice.  So from a mouse study to geting approval I would estimate at least 5 years. And most of the progress that looks good in mice do not make it past Phase 2 of a trial. Trials take years to complete and to analize the data. Then FDA takes years to approve. Research seems to be…[Read more]

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    Pete replied to the topic Remembering if you took Medications in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 6 months, 3 weeks ago

    Don’t you need to take OFEV with a meal? 9 PM seems rather late for a meal .

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    Pete replied to the topic Remembering if you took Medications in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 6 months, 3 weeks ago

    A lot of great ideas. Thank You all. I found a pill container with 3 compartments. I am going to try using that for my Esbriet meds first and see how it goes. I thought I was the only one with this issue of forgetting meds, but now I see many with this issue. LOL

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    Pete started the topic Remembering if you took Medications in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 6 months, 4 weeks ago

    How do you remember if you took your meds or not? Whether it be morning dose, afternoon dose, or evening dose. My morning Esbriet I place it next to my coffee but the afternoon or evening dose sometimes I can’t remember if I took my pill or not.

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    Pete replied to the topic Concentrator nasal cannula storage in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 9 months ago

    Thanks for the great tips folks. I will try them all. You would think the designers of home units and portable units would have designed something to hold the cannula and keep it germ free when not in use.

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    Pete started the topic Concentrator nasal cannula storage in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 9 months, 1 week ago

    No matter what I try my nasal cannula hose always seems to end up on the floor or ground when not in use.  It happens with my home concentrator and my portable concentrator. Does anyone have any tips on how to prevent the nose end of the cannula from hitting the ground? Especially in public places and outdoors.

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

    I found this info on Esbriet and am trying to understand it. Is it saying 80% of this expensive drug goes right through you and only 20% is being absorbed?
    <h5 style=”font-size: 13px; font-family: ‘Open+Sans’, sans-serif;”>Elimination</h5>
    <h5 style=”font-size: 13px; font-family: ‘Open+Sans’, sans-serif;”>The mean terminal half-life is…[Read more]

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

    No appetite issues for me Terence. Always hungry here. Trying to lose a few pounds but its not happening.

  • Profile picture of Pete

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

    Thank you Karen and Regina you both have helped. I will try the 4 hour intervals at meal times even though the Web Doctor in me thinks it should be 8 hours and thinks I am developing an ulcer.

  • Profile picture of Pete

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

    Thanks Karen, I hear what you are saying. I thought 3 times a day would mean spreading it out every 8 hours and that’s what I was trying to do (breakfast, dinner, and b4 bed). My 3 meals are not 8 hours apart. My meals are only about 4 hours apart during the day. My meals are from 8 am to 6 pm. Do you think it is ok to squeeze the 3 doses in a 10…[Read more]

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    Pete started the topic Esbriet and ulcers in the forum Esbriet (Pirfenidone) 1 year, 2 months ago

    Does anybody know if taking Esbriet on an empty stomach can cause an ulcer? I usually take my last dose before I go to sleep at night and do not like to eat before going to sleep. The two other doses I take during the day are after meals.

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    Pete replied to the topic Covid vaccine in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 1 year, 4 months ago

    I hear what you are saying Mark but it’s hard for me to understand when they knew a vaccine was coming over 6 months ago and there are people way above my pay scale getting paid to figure this issue out. I wonder where I can apply for this type of job.<span style=”color: #303030; font-family: open sans;”><span style=”font-size:…[Read more]

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    Pete replied to the topic Covid vaccine in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 1 year, 4 months ago

    I wonder why if the Covid-19 is so bad for everybody they aren’t vaccinating people 24 hours a day 7 days a week (24/7) ? I would have no problem going to an appointment in the middle of the night if that is what it takes to speed up the vaccination process.

  • Profile picture of Pete

    Pete started the topic Covid vaccine in the forum Coronavirus (COVID-19) and Pulmonary Fibrosis 1 year, 5 months ago

    When do you think IPF patients will be eligible for the covid vaccine? I am thinking late January but hope sooner.

  • Profile picture of Pete

    Pete replied to the topic Portable Oxygen Concentators in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 6 months ago

    Hi Charlene,

    Thank You for your input. There is a lot of info in that one paragraph I did  not know or even thought of. I did not know POC’s flow rates only go so high, ten pounds is a lot of extra weight to carry around, nice to be able to charge battery in you car, and being able to fly with one is great. I have tanks so I currently cannot fly…[Read more]

  • Profile picture of Pete

    Pete started the topic Portable Oxygen Concentators in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 1 year, 6 months ago

    Hello all,

    Does anyone have info on Portable Oxygen Concentrators? I am looking for which kind work best and their cost. Do you have to buy them or can you rent them? Does Medicare cover these machines? Are they continuous flow or pulse?

    Thanks for any info.

    Pete

     

  • Profile picture of Pete

    Pete replied to the topic GLPG1690 Clinical Trial in the forum Clinical Trials 1 year, 7 months ago

    I also did not qualify for this trial because of my CT Scan did not the show the radiologists what they were looking for. I was looking forward to this trial too.

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