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    Re: Coping with stress on current pandemic

    Personally, I don't know what to believe. Many of the experts who have made predictions have been proven wrong. They don't come out and admit that either. It doesn't stop new predictions either. This...
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    Re: Coping with stress on current pandemic

    Hey drz, how are things going there now? How is it by you?

    My son lives in a place where everyone is living their life as pre COVID days, for better or for worse, after being locked up for three...
  3. Thread: Covid-19

    by Aneinu
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    Re: Covid-19

    Thank you. That was my point of confusion. I read the article mentioned by Pete twice and I thought it was saying that steroid use AFTER COVID diagnosis was good, but it didn't say anything about...
  4. Thread: Covid-19

    by Aneinu
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    Re: Covid-19

    Are you able to elaborate please on what this article/study indicates for people who use steroids/Prednisone for GPA?

    Thank you

    Sent from my moto z4 using Tapatalk
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    Re: New to Wegener's, new to the forum

    Belated welcome Susan,
    My God, what a story, so sorry to hear. Glad to hear that the rituximab and the press are doing their job and your feeling better. Enjoy life! You sound like you have a lot of...
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    Re: Thankful to find this forum

    Thanks,

    Our experience with avocopan was ok, but not great. He did experience flare ups still. Now, he is on a cousin of rituximab, the name slips my mind, and thank God, doing very well.

    I...
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    Re: Thankful to find this forum

    Welcome Dave

    Those two plus years must've been excruciating, especially the unknown. Knowing your condition certainly helps somewhat. As an aside, it is a sorry state that there are still medical...
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    Re: Recently diagnosed with GPA

    Welcome Mandy,

    Welcome to the club, sorry as that may sound. I don't have the GPA condition, but my son does, so I somewhat live with it as well.

    I'm really sorry to hear about your situation....
  9. Thread: Covid-19

    by Aneinu
    Replies
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    752

    Covid-19

    Hi, hope everyone is doing well. Is there a topic/thread dedicated to the current situation? What are your doctors saying? Should we be much more vigilant than everyone else? Are we taking...
  10. Thread: 20 year old son

    by Aneinu
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    Re: 20 year old son

    Thank you.

    Yosef was discharged on Sunday after three iv-infused heavy doses of steroids. While he is still coughing up some blood (which is an indicator of bleeding in the lungs), he says he is...
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    Re: Abatacept : Pred / Avacopan / Systemic Adjustments

    Thank you Tom,

    My son is in this trial. As he still has flare ups they are looking to double the dose of Avacopan. I am curious to see what the phase three results look like.

    Sent from my moto...
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    Re: In process of being diagnosed

    I have never heard or researched limited gpa, and it sounds like Alysia is correct. You either have it or you don't. However, we were introduced to a middle aged man who developed gpa and has routine...
  13. Thread: 20 year old son

    by Aneinu
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    20,887

    Re: 20 year old son

    Hemoglobin is trending downward so they will be admitting him.

    Sent from my moto z4 using Tapatalk
  14. Thread: 20 year old son

    by Aneinu
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    20,887

    Re: 20 year old son

    Well, sadly, once again a full-blown flare up. He has bleeding in his lungs and kidneys acting up again. Ankles swelling as well. He will get high level preds thru infusion. They were on schedule to...
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    Re: Dr. Peter Merkel Philadelphia

    How did it go?

    My son, who now has gpa for four years, had blood in his urine, rashes - they took a biopsy, joint pain - they took a chest scan. Dr is thinking of raising preds from 10 to 40 and...
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    Re: Dr. Peter Merkel Philadelphia

    You might bump into my son there. He's on his way there as well. Lots of joint pains.

    Sent from my moto z4 using Tapatalk
  17. Re: New Patient appointment at Cleveland Clinic

    She is very good though. You're in good hands.

    Sent from my moto z4 using Tapatalk
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    Re: Got a cold, should we go to doctor?

    Agree with the above. Weg patients (perhaps like most people) don't like to be nagged. They do know when it's a cold and when it's a gpa symptom. Not always do they tell us, however. God bless.

    A...
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    Re: Methotrexate without Prednisone

    Welcome and sorry to hear about your daughter. This disease is tricky and there are no absolutes. It is important to have a doctor that you trust. There is, however, nothing wrong with asking...
  20. Thread: 20 year old son

    by Aneinu
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    20,887

    Re: 20 year old son

    Good morning, thank you all. His headaches are a bit better, but night sweats still there. He received results from labs yesterday. White blood cells high at 11, but that is his usual. Glucose high...
  21. Thread: 20 year old son

    by Aneinu
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    20,887

    Re: 20 year old son

    Thank you. I believe labs are ok. I did not hear differently.

    Sent from my SM-G920V using Tapatalk
  22. Thread: 20 year old son

    by Aneinu
    Replies
    233
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    20,887

    Re: 20 year old son

    No worries at all about the sympathy. Thank you. I love the good advice. He's still having headaches and night sweats although last night thank God he downgraded the aches to medium pain. He probably...
  23. Thread: 20 year old son

    by Aneinu
    Replies
    233
    Views
    20,887

    Re: 20 year old son

    The Philadelphia doctors are concerned about his headaches. However, they do not want to give ibuprofen or strong pain medication, for they are detrimental to the kidneys. If headaches persist, they...
  24. Re: ABROGATE trial: Abatacept for the Treatment of Relapsing, Non-Severe, Granulomato

    Good to hear. Hope it works. Now that I'm looking more closely, this is a different study. The one cited above is for abatacept; the study my son is in is with avacopan. I do not know if they are...
  25. Thread: 20 year old son

    by Aneinu
    Replies
    233
    Views
    20,887

    Re: 20 year old son

    Thank you Alysia, your words are always beneficial.

    The doctors thought it was sinus related, as his markers were good and there was no blood or crusting from the nose.

    It's July 4th weekend...
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