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  1. Replies
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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...
  2. 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...
  6. 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...
  8. Thread: Newly Diagnosed

    by seied
    Replies
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    1,301

    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...
  9. Thread: Newly Diagnosed

    by seied
    Replies
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    1,301

    Re: Newly Diagnosed

    Then next time ask him to prescribe your Prednisone using the 2.5mg instead of 5mg pills.
  10. 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...
  11. Thread: Newly Diagnosed

    by seied
    Replies
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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...
  12. 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
  13. Thread: odd symptoms?

    by seied
    Replies
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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.
  15. Thread: Help

    by seied
    Replies
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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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    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...
  18. Thread: Hi everyone

    by seied
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    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...
  19. 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...
  20. Thread: Second Opinion

    by seied
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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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    Re: Diagnosed December 2018

    I'm glad for you. Your Rheumatologist is doing the right things.
    I'm traumatized because my former rheumatologist failed to prevent my osteoporosis.
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    Re: Diagnosed December 2018

    Hi Ken,

    Fortunately, you were diagnosed early on.

    Since you're taking high doses of prednisone, I strongly recommend checking your vitamin D levels, and get prescriptions for Vitamin D and...
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    Re: GPA diagnosis very recently confirmed

    Hi Eyes5,

    I think it's because our immune system that's targeting small vessels in a physiological way, there are no natural substitutes to a medical treatment of this disease. Everyone here would...
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    Re: Prednisone Reduction, Flonase

    When I was at 10mg of prednisone a day, I tapered by 1mg every 2 weeks.

    Masha, are you able/allowed to try 9mg/day next? What happens?

    I'm currently down to 5mg/day and I have to stop tapering...
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    Re: Extremely Frustrating Flare.

    Pete, it's so nice that you're able to be off prednisone completely. I'll follow your advice to taper .5mg a month.

    I'm on Mtx, just like Brit, and it's working well for me. Other than constant...
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