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  1. Thread: Haircut

    by seied
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    35

    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...
  7. Thread: Meds

    by seied
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    618

    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...
  11. Thread: Lena's story

    by seied
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    803

    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...
  13. Thread: Newly Diagnosed

    by seied
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    1,954

    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...
  14. Thread: Newly Diagnosed

    by seied
    Replies
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    1,954

    Re: Newly Diagnosed

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

    by seied
    Replies
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    1,954

    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...
  16. Thread: Newly Diagnosed

    by seied
    Replies
    26
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    1,954

    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...
  17. Thread: 20 year old son

    by seied
    Replies
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    19,558

    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
  18. 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.
  20. Thread: Help

    by seied
    Replies
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    1,723

    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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    Re: Just diagnosed from Queensland Australia

    What a great success story from Australia!

    That is my problem with the Vasculitis Foundation here in the US.
    Other than fundraising, they do nothing to next to nothing to bring awareness to all...
  23. Thread: Hi everyone

    by seied
    Replies
    6
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    834

    Re: Hi everyone

    IMHO, your doctors failed (and are still failing) to treat you, thus your autoimmune disease attack has gone unimpeded for 8 years.
    Find an entire new team of specialists.
    Start with rheumatologist...
  24. Re: My hands are losing circulation while sleeping

    It may have something to do with a straining position of your hand(s) and/or body weight on top your hand(s) for a prolonged time while sleeping.

    Otherwise under normal circumstances would not be...
  25. Thread: Second Opinion

    by seied
    Replies
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    Re: Second Opinion

    I would also recommend to convey a sense of urgency because your daughter needs see the Weg specialist within a week instead of several months, these doctors are very few and tend to have long...
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