1. < Autoimmune Diseases

GPA granulomatosis with polyangiitis

Posted by suska @suska, Sep 15, 2017

Just diagnosed in May, 2017. On a maintenance dose of 12.5 mg. per week of methotrexate Tapering off prednisone since May also-2.5 mg every other day for 1 more week. Was feeling fine until @ two weeks ago with starting the maintenance dose of methotrexate. For two-plus days I have side effects of extreme fatigue and tiredness and some gastrointestinal problems. Also, some insomnia. Is this normal for methotrexate? Could the symptoms be related to the steroid tapering? Thank you for considering this.

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jan 29, 2022
In reply to @purehope2022 "What are you taking to control your GPA... not just the kidney part? When diagnosed in..." + (show)
@purehope2022

What are you taking to control your GPA... not just the kidney part? When diagnosed in 2018 I was seeing a hematologist because my body stopped making Red blood cells. Once the GPA was being treated 60mgs daily of Prednisone and 4 weekly infusions of Rituxan every 6 months, I didn't need any more blood transfusions to keep me alive. I did, in the process also lose my septum (GPA ate a whole right through it ... as well as my right eardrum. Now, finally in some kind of remission, I just had my eardrum reconstructed at Mayo in Jacksonville. The Reumatologists there did my diagnosis and a treatment plan--then I went home and had my ENT, Hematologist and Reumatologist look at their reports. Not one of them balked at having the research of those on the front lines of research. Once GPA is under control... it stops the destruction in its tracks. My body began making RBC's again. I lrecently learned of a woman whose hearing returned 4 years later). Best of everything to you on your journey. God bless you.
Unflatering photo of me 22 hours post-op, rocking my Van Gogh ear bandage.

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@purehope2022 You may see the photo as an unflattering picture of you, but the rest of us see a healthy, happy woman!!! Please stay around, others NEED your positive outlook!

REPLY
purehope2022 | @purehope2022 | Mar 15, 2022
In reply to @colleenyoung "Purehope, I love your username. And yes, you certainly are rocking the Van Gogh look. It's..." + (show)
@colleenyoung

Purehope, I love your username. And yes, you certainly are rocking the Van Gogh look. It's so helpful to see real pictures and read first-hand experiences. Yay, that you're producing red blood cells again.

How is your hearing with the newly reconstructed ear drum.

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I am now 6 weeks post-op with newly constructed eardrum. My first hearing test was not encouraging. A drop in both high end and low end sounds with reconstruction--I heard better with the hole. 'However, having a hole in my eardrum meant that with every shower, hair wash, swim, etc. I had to make a water-proof plug with a cotton ball and vaseline, so that it couldn't get into my ear canal. I can't believe how much easier life is without having to think and about and do that. I'll have a re-test in 6 months to see if anything has improved. With my hearing loss now in the "moderate" range, I will be a candidate for a hearing aid. Still hoping for the best. Time will tell.

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1 reply
Moderator
Colleen Young, Connect Director | @colleenyoung | Mar 17, 2022
In reply to @purehope2022 "I am now 6 weeks post-op with newly constructed eardrum. My first hearing test was not..." + (show)
@purehope2022

I am now 6 weeks post-op with newly constructed eardrum. My first hearing test was not encouraging. A drop in both high end and low end sounds with reconstruction--I heard better with the hole. 'However, having a hole in my eardrum meant that with every shower, hair wash, swim, etc. I had to make a water-proof plug with a cotton ball and vaseline, so that it couldn't get into my ear canal. I can't believe how much easier life is without having to think and about and do that. I'll have a re-test in 6 months to see if anything has improved. With my hearing loss now in the "moderate" range, I will be a candidate for a hearing aid. Still hoping for the best. Time will tell.

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@purehope2022, did your surgeon say anything about an adjustment period to "relearn" hearing with the newly constructed eardrum? I'm not well-versed in this, but I wonder if @julie04 may have some thoughts.

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1 reply
purehope2022 | @purehope2022 | Mar 18, 2022
In reply to @colleenyoung "@purehope2022, did your surgeon say anything about an adjustment period to "relearn" hearing with the newly..." + (show)
@colleenyoung

@purehope2022, did your surgeon say anything about an adjustment period to "relearn" hearing with the newly constructed eardrum? I'm not well-versed in this, but I wonder if @julie04 may have some thoughts.

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Thanks for asking. We will do a re-check in 6 months. Dr. Breen didn't suggest a "re-learnng." I have been using my earphones with just that ear to 'force it' to hear 😉 That is completely my idea, there is no medical science or advice behind it, only pure hope <3

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