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Mary Frances

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@maryfrances

Prayers for my dying mother please🙏🙏🙏 View
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    Mary Frances started the topic In Loving Memory in the forum In Loving Memory 1 month, 2 weeks ago

    ♥️Emily West♥️

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    Mary Frances replied to the topic All IPF Clinical Trials in the forum Clinical Trials 1 month, 3 weeks ago

    MAUDE is something you can check in with

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    Mary Frances replied to the topic Shortness of breath and how to catch it in the forum Diagnosis​ ​Information​ ​and​ ​General​ ​Questions 2 months ago

    Have doctor increase your 2 liters of oxygen There are also other cannulas to use for continuous flow. For IPF they also have a full face masks. The doc may do walking and breathing test for you to see if you need your oxygen increased.

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    Mary Frances posted an update 2 months ago

    Prayers for my dying mother please🙏🙏🙏

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    Mary Frances replied to the topic The inevitable…. in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months ago

    Asking for prayers for my mother Emily. She was diagnosed in 2018. We are not sure when she actually got this disease. We have called in hospice & today being Easter had no care until 5:00. I called at 8 am eastern time. My mother gasped for air since 4 am night before. I’m messaging this to all so hopefully this helps other patients prepare for e…[Read more]

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    Mary Frances and Profile picture of MindyMindy are now friends 2 months ago

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    Mary Frances and Profile picture of Bonnie WelchBonnie Welch are now friends 2 months ago

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    Mary Frances posted a new activity comment 2 months ago

    My mother Emily was diagnosed in 2018 with IPF. We had here on bp meds and started her on 10 mg of prednisone. It worked wonders. Then they wanted her to try Tyveso and Ofev. She cannot tolerate the Ofev and stopped. I read Ofev takes 6- 12 weeks to really get inside of her body. At the 6 week mark they added Tyveso and inhaler 4 times a day. She…[Read more]

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    Mary Frances and Profile picture of Adele FriedmanAdele Friedman are now friends 2 months ago

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    Mary Frances posted an update 2 months ago

    @sbstrum If you click on my profile I believe you can see everything I posted about her condition. I’d love to hear what anyone has to say

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    Mary Frances and Profile picture of Stephen B. Strum, MDStephen B. Strum, MD are now friends 2 months ago

    • Profile picture of Mary Frances
      Mary Frances replied 2 months ago

      My mother Emily was diagnosed in 2018 with IPF. We had here on bp meds and started her on 10 mg of prednisone. It worked wonders. Then they wanted her to try Tyveso and Ofev. She cannot tolerate the Ofev and stopped. I read Ofev takes 6- 12 weeks to really get inside of her body. At the 6 week mark they added Tyveso and inhaler 4 times a day. She…[Read more]

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    Mary Frances posted an update 2 months ago

    @sbstrum WELL SAID!!!

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    Mary Frances posted an update 2 months ago

    This is to anyone that can help. Will Dexamethsone be something to replace prednisone?

    • Profile picture of Stephen B. Strum, MD
      Stephen B. Strum, MD replied 2 months ago

      Both are steroids that have anti-inflammation properties. Prednisone is shorter acting vs. dexamethasone with a much longer half life. Both are corticosteroids so can lead to gastric upset/ulcer, glucose intolerance that if not controlled leads to diabetes, to high blood pressure, and also to immunosuppression, and bone loss. This said, I am not…[Read more]

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    Mary Frances replied to the topic Tests interval in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months ago

    My mother Emily was diagnosed in 2018 with IPF. We had here on bp meds and started her on 10 mg of prednisone. It worked wonders. Then they wanted her to try Tyveso and Ofev. She cannot tolerate the Ofev and stopped. I read Ofev takes 6- 12 weeks to really get inside of her body. At the 6 week mark they added Tyveso and inhaler 4 times a day. She…[Read more]

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    Mary Frances posted an update 2 months, 3 weeks ago

    @chris-1964 Did you say you may have gotten IPF from Covid?

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      Chris replied 2 months, 3 weeks ago

      NOPE. And right now, it’s “just” PF. But I started having mild sob last year, mentioned it to doc who sent me for xray. Radiologist saw it and I was send for HRCT, which confirmed mild PF both lower lungs.

      As to covid, if you recall, when the pandemic hit people who had been on a ventilator ended up with “lung scarring”. I dont recall it being…[Read more]

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    Mary Frances replied to the topic Tyveso in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months, 3 weeks ago

    Hello my Emily (my brave sweet mother) She has just joined I am praying for all of you. We must share our experiences to help others🙏 You are right Pete everyone is different and needs to be monitored closely We had such a scare

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    Mary Frances replied to the topic Tyveso in the forum Join the Discussion: Welcome to all PF/IPF Patients 2 months, 3 weeks ago

    Praying for you My mom has the powder form 4 times a day On day 9 her bp was 200/100 we were calling an ambulance Had to stop the Tyveso & Ofev because she couldn’t stop throwing up the next two days. Made two trips by ambulance over the last 3 days. Her bp is finally coming down and staying at 140/90 What a horrible experience No side effects m…[Read more]

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    Mary Frances started the topic Tyveso in the forum Join the Discussion: Welcome to all PF/IPF Patients 3 months ago

    Hello All

    Is anyone using Tyveso? The powder inhaler that was FDA approved last May 2022 to help pulmonary hypertension in ILD? Any comments are much appreciated

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    Mary Frances posted a new activity comment 5 months, 1 week ago

    Thank you so much!!! Prayers for all of you

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    Mary Frances and Profile picture of Christie PatientChristie Patient are now friends 5 months, 1 week ago

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