Search:

Type: Posts; User: seied

Page 1 of 3 1 2 3

Search: Search took 0.00 seconds.

  1. Replies
    13
    Views
    345

    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.
  2. Thread: Help

    by seied
    Replies
    8
    Views
    330

    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.
  3. Replies
    23
    Views
    1,453

    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...
  4. Replies
    23
    Views
    1,453

    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...
  5. Thread: Hi everyone

    by seied
    Replies
    6
    Views
    381

    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...
  6. 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...
  7. Thread: Second Opinion

    by seied
    Replies
    16
    Views
    942

    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...
  8. Replies
    8
    Views
    490

    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.
  9. Replies
    8
    Views
    490

    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...
  10. Replies
    7
    Views
    525

    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...
  11. Replies
    10
    Views
    752

    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...
  12. Replies
    12
    Views
    1,032

    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...
  13. Replies
    12
    Views
    1,032

    Re: Extremely Frustrating Flare.

    Sorry you're going through this again.

    I had a similar experience. When I suffered my first flare up a few of months ago, I had to increase prednisone back to 20mg and I'm tapering back down at a...
  14. Thread: Sinus Congestion

    by seied
    Replies
    9
    Views
    547

    Re: Sinus Congestion

    How about trying Zyrtec, Allegra, et.al?
  15. Replies
    23
    Views
    2,663

    Re: New to Wegener world

    Well, keep in mind that when you tried it before it was dispensed wrong, so the negative side effects might not be due to the Mtx itself but the wrong daily dose.

    Also, I'm taking folic acid every...
  16. Replies
    23
    Views
    2,663

    Re: New to Wegener world

    Maybe you'd want to give Mtx in pills another try.
    A combination of weekly Mtx and a daily low dose prednisone might put an end to a smoldering GPA.
  17. Replies
    23
    Views
    2,663

    Re: New to Wegener world

    Hi Alysa,

    Someone please correct me if I'm wrong, but I don't think there's a protocol for daily Mtx.

    https://www.pharmacytimes.com/publications/issue/2005/2005-02/2005-02-9297

    Another: ...
  18. Replies
    23
    Views
    2,663

    Re: New to Wegener world

    Hi Masha,

    I don't think Methotrexate is a daily pill. It's a once-a-week, cytotoxic chemo medication.

    Ed.
  19. Replies
    11
    Views
    1,221

    Re: Prednisone questions

    High-dose prednisone without Alendronate, Vitamin D2/D3, and calcium you'll end up with osteoporosis.
  20. Replies
    11
    Views
    1,221

    Re: Prednisone questions

    Please make sure that you don't have a deficit of vitamin D, that you are taking in at least 100% of calcium dose every day, that you're prescribed enough alendronate a week, and that you're also...
  21. Replies
    16
    Views
    1,656

    Re: Low white count on Rituxin

    Completely agree. I would even venture to say that if Wegs is allowed to run its course, without treatment it will get to the lungs and kidneys and destroy them.
  22. Replies
    33
    Views
    4,410

    Re: Tapering on predizone

    Natrice,

    How far have you come?
    My 2week/mg until zero was draconian, but I think Mtx is doing it's job because the mini-relapse starting to subside.

    Ed.
  23. Re: Diagnosed in Dec 2017, just now getting around to saying hello

    Yes, I wonder if you're on Prednisone, and if not, how did you get off of it so quickly.
    Also, you may want to make sure that your doctors have are plan to get a consultant who's an expert on...
  24. Thread: Anniversary

    by seied
    Replies
    21
    Views
    1,946

    Re: Anniversary

    I'm considering flying to Alaska to be her patient!

    Congrats on your drug-free remission.


    Ed.
  25. Re: Diagnosed in Dec 2017, just now getting around to saying hello

    Hi Mattieus,

    Welcome to this great forum.
    Thanks for sharing your story. I'm also a weginner, diagnosed about the same time.
    I'm glad things are under control, what you went through was as close...
Results 1 to 25 of 68
Page 1 of 3 1 2 3