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  1. Thread: Avacopan

    by sshiveley
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    121

    Re: Avacopan

    This drug sounds exactly like many of us need! Would love to be in the trial of this, hope is on the agenda for a cure for all of us. Sherry
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    Re: Newly Diagnosed

    I too am blown away by this diagnosis, but looking back, it all makes sense, dealing with this has been difficult. Flare ups continue, the fatigue is hard to deal with, but I am finally getting a...
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    Re: Trying to figure it all out.

    You mentioned UC in Cincinnati, have you considered OSU in Columbus? Dr. Alexandria Meara is my rheum.
  4. Re: shankxonline - My path to identify GPA and overcome it

    I don't post a lot on here, as I too am new to this ugly disease, there are so many that have so much more knowledge about this than I do, so I will continue to read their thoughts and advice. There...
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    Re: In process of being diagnosed

    Lea- I, like you, considered myself healthy too, what a throw back to watch my life being turned upside down. You are in the right place joining this group. I went back to work in the ER after being...
  6. Re: shankxonline - My path to identify GPA and overcome it

    I take 1 step forward 2 steps back. When I had written that I was down to 7.5 mg of Prednisone, yet another flare up, I was weaning slower this time. Rt eye is beginning to protrude again, Double...
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    Re: Your Thoughts

    My Dr specializes in Vasculitis, I am hoping the rituximab in December will do the trick. Seems as though when I taper down, symptoms flare up again, gee, even my freakin heels hurt now. I taper 2.5...
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    Re: Your Thoughts

    My WBC is elevated to 16.39, Segs and Bands are 13.20, C-Reactive protein 10.8, Proteinase 3 antibodies and ANCA still read Positive, no numbers given. My Doc is weaning me from 40mg down to 7.5mg,...
  9. Re: shankxonline - My path to identify GPA and overcome it

    Annekat- Our symptoms are so similar to each other, ugh, I hate this disease! But you are right, we are much better off than some. I am down to 7.5mg Prednisone, my voice is hoarse a lot of the time,...
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    Re: Your Thoughts

    I definitely know what you mean about the prednisone tapering and flare ups, I was weaning down, then the sinuses started again, constant coughing and hoarse throat. I am now down to 7.5 mg and feel...
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    Re: Newly diagnosed and Divorcing

    I am so sorry that you don't have the support you need, that is the worst, dealing with this on your own. If you have walked on egg shells with stress and anxiety in your marriage, maybe after you...
  12. Re: Wegeners/GPA for 41 years - Transplant for 25 - Having a Relapse

    The same with me during the infusions, I just want to sleep, I think it is the Benadryl, lol
  13. Re: Wegeners/GPA for 41 years - Transplant for 25 - Having a Relapse

    Your post makes me feel bad that I even complain about my issues with GPA, you have it much worse than I do. My kidney functions seem to be fine at this point, I am sorry you are going through this,...
  14. Re: Newly diagnosed - ANCA positive, Joints and muscle pains, eye pressure

    Our symptoms are very much alike, I started with what I and my NP thought was a sinus infection, a round of Zithromax seemed to help for the first couple of days, but I knew it was more than just...
  15. Thread: Flare?

    by sshiveley
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    Re: Flare?

    I contacted my rheumatoidologist today with similar symptoms, her nurse told me to see my PCP, really? SMH
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    Re: Newly Diagnosed

    What was the breaking point that they approved him? I still have to make appointment with disability person, just don’t know if I can swing it financially. Sherry
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    Re: Newly Diagnosed

    Marsha, Thank you so much for this information!! I will definitely look into it, Sherry
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    Re: Newly Diagnosed

    Being new to this will take time to figure out what my body is telling me, thanks for your input, Sherry
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    Re: Newly Diagnosed

    I am not comfortable with changing my doses yet, staying on 15 until I see the Dr. again but I have seen here on this site that many people do this, just don’t trust myself yet to play with the...
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    Re: Newly Diagnosed

    Thank you!
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    Re: Newly Diagnosed

    Thank you so much for your post, I am trying
    here, just trying to grasp all of this. I am so blessed to find this site.
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    Re: Newly Diagnosed

    I did check into disability at work, they only provide 60%, not enough sadly. Sherry
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    Re: Newly Diagnosed

    Thanks Pete, for some reason I thought I was taking it for my kidneys, good to know I am somewhat protected, especially with the people I come into contact with at work. Sherry
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    Re: Newly Diagnosed

    I am also on Bactrim X3 weekly, but only 3 times a week how does this deter bacteria?
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    Re: Newly Diagnosed

    The rheumatoidologist specializes in GPA, I really don’t think I am in remission either, don’t feel like myself at all, which is frustrating as I was always active. I was on sick leave for 2 months...
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