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  1. Re: GPA with right sided pseudo tumour ,leptomeningeal thickening,peripheral neuropat

    Make sure to ask your doctor to treat the side effects (such as bone loss) caused by long-term, high dose usage of prednisone.
    I'm not sure that 80mg/day for 18 months is within treatment protocol....
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    Re: Thankful to find this forum

    Glad you're here and in the right path.
    I was also misdiagnosed 4 times before I finally got the right doctor. So incredible lucky this ordeal took only 5 weeks.

    I did go back to see all those...
  3. Thread: Lung Flare

    by seied
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    Re: Lung Flare

    I hope they got you some weekly alendronate/fosamax to prevent more bone loss.
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    Re: Where is Everyone?

    My last rheumi visit I had was in person.
    It's a busy practice with many doctors on staff.
    I asked my doctor if their office had any of their patients contract or die of the C'rona.
    Guess what......
  5. Thread: Haircut

    by seied
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    Re: Haircut

    I've been cutting my own hair way before covid-19 became fashionable. :cool1:
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    Re: New to forum, not new to GPA

    Sorry I was too blunt.
    I'm glad you have a good relationship with your doctor.

    Because now you're having other organs involved, your course of treatment may change. Hopefully being young and if...
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    Re: Coronavirus and GPA

    It's nice everyone wearing a mask; makes us immunosuppressed so much safer.

    It's also kind of nice to wear a mask and not stick out like I'm about to rob a bank.

    I'll wear a mask from now on,...
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    Re: Coronavirus and GPA

    Everyone now is doing what most of us have been doing all along... social distance, keep hands clean, not touch anything.
    In a way, it's good for us immune-suppressed when everyone around us is...
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    Re: New to forum, not new to GPA

    Darn! My heart goes out to you. So sorry you've been going through this so early in your life. Most of us get it in our 50's. Also, in the plus side, in your 30's it means you heal faster.

    Mine...
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    Re: Split decision on diagnosis

    If you don't have kidney involvement, try Methotrexate pills and an initial high doses of steroids.
    If you have Wegs, in 3 days your symptoms will subside, in a week you'll be "fine."
    Yes, get a...
  11. Thread: Meds

    by seied
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    Re: Meds

    1. Eat well anyway, but it's not nearly enough to offset the damage caused by the illness.
    2. Crash on chocolate and be happy, regardless.
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    Re: In process of being diagnosed

    I'd be concerned about having to take immunosuppression medications and working in a school full of kids with the flu all the time.
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    Re: Methotrexate without Prednisone

    Perf septum is not mild Weg. Constant joint pain and nosebleeds, not mild.
    These are symptoms of active auto-immune. Remission is urgently needed.
    Doctor "kind of left it up to her." Did doctor...
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    Re: Methotrexate without Prednisone

    I'm on Mtx and Prednisone.
    My Mtx slows things down so that a little Prednisone can bring the auto-immune attack to a complete halt (remission). I frankly don't think either drug can do the job by...
  15. Thread: Lena's story

    by seied
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    Re: Lena's story

    Lena,

    Wow. You're so talented!
    I hope you don't mind me sharing a link to your art for everyone here to enjoy.


    Ed.
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    Re: 17 Year Old Daughter

    Hi Samantha,

    I'd say make sure that they keep her vitamin D levels always high (blood work screening) and lots of calcium to prevent bone damage from steroids medication.
    Best wishes to you and...
  17. Thread: Newly Diagnosed

    by seied
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    Re: Newly Diagnosed

    Agreed, you can change your dose later on once you have achieve remission, are taking low doses and gained experience with this.
    There are two stages to our treatment: 1)Achieve remission 2)Maintain...
  18. Thread: Newly Diagnosed

    by seied
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    Re: Newly Diagnosed

    Then next time ask him to prescribe your Prednisone using the 2.5mg instead of 5mg pills.
  19. Thread: Newly Diagnosed

    by seied
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    Re: Newly Diagnosed

    So true!
    I keep Prednisone in 1mg, 5mg and 10mg pills.
    I adjust my dose on a daily basis, currently I'm at 3.5mg/day.
    If you find that continuing to taper causes symptoms to reappear, then this...
  20. Thread: Newly Diagnosed

    by seied
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    Re: Newly Diagnosed

    Dear Sherry,

    Sorry you are also going through this.

    I'm about to complete my second year with this and I managed to figure out a few things about how this disease and the treatment interact...
  21. Thread: 20 year old son

    by seied
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    Re: 20 year old son

    I think that prednisone and motrin (ibuprofen) don't mix, take tylenol instead.

    https://www.drugs.com/drug-interactions/motrin-with-prednisone-1310-780-1936-0.html
  22. Thread: odd symptoms?

    by seied
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    Re: odd symptoms?

    Can you do a simple test?...
    Ask him to move his eyes up and down without moving his head.
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    Re: Azathioprine - Mycophenolate mofetil

    Hi Angela,

    Have you/can you take Nexium?
    Nexium is recommended when taking high doses of prednisone.
    I take it in the morning of the day I take methrotrexate.

    Ed.
  24. Thread: Help

    by seied
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    Re: Help

    Sorry about your predicament.
    I suggest you ask your doctor if Methrotrexate (Mtx) would work for you.
    Here in the US, a month's supply costs only $40.
    Good luck to you.
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    Re: Just diagnosed from Queensland Australia

    Yes, every one of these specialists should have GPA (and other AI) in their radar.
    Vast majority of these eventually arrive at AI when AI should have been suspected at the beginning.
    We all had...
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