Search:

Type: Posts; User: Aneinu

Page 1 of 8 1 2 3 4

Search: Search took 0.02 seconds.

  1. Thread: 20 year old son

    by Aneinu
    Replies
    233
    Views
    18,042

    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...
  2. Replies
    3
    Views
    231

    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...
  3. Replies
    14
    Views
    521

    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...
  4. Thread: 20 year old son

    by Aneinu
    Replies
    233
    Views
    18,042

    Re: 20 year old son

    Hemoglobin is trending downward so they will be admitting him.

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

    by Aneinu
    Replies
    233
    Views
    18,042

    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...
  6. Replies
    15
    Views
    2,145

    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...
  7. Replies
    15
    Views
    2,145

    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
  8. Re: New Patient appointment at Cleveland Clinic

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

    Sent from my moto z4 using Tapatalk
  9. Replies
    5
    Views
    453

    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...
  10. Replies
    15
    Views
    475

    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...
  11. Thread: 20 year old son

    by Aneinu
    Replies
    233
    Views
    18,042

    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...
  12. Thread: 20 year old son

    by Aneinu
    Replies
    233
    Views
    18,042

    Re: 20 year old son

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

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

    by Aneinu
    Replies
    233
    Views
    18,042

    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...
  14. Thread: 20 year old son

    by Aneinu
    Replies
    233
    Views
    18,042

    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...
  15. 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...
  16. Thread: 20 year old son

    by Aneinu
    Replies
    233
    Views
    18,042

    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...
  17. Thread: 20 year old son

    by Aneinu
    Replies
    233
    Views
    18,042

    Re: 20 year old son

    Thank you. My mistake. He did tell me Tylenol.

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

    by Aneinu
    Replies
    233
    Views
    18,042

    Re: 20 year old son

    Hi, how are you all?
    Since my son got married and moved out, I haven't frequented this site much (there should be a law against that).
    He has been doing well, thank God, but his sinuses keep acting...
  19. Replies
    15
    Views
    2,145

    Re: Dr. Peter Merkel Philadelphia

    We are seeing Dr merkel tomorrow, God willing.

    Sent from my SM-G920V using Tapatalk
  20. Re: ABROGATE trial: Abatacept for the Treatment of Relapsing, Non-Severe, Granulomato

    Has anyone heard more about this study please? Thank you so much. Our Dr. mentioned this an option.

    Sent from my SM-G920V using Tapatalk
  21. Replies
    2
    Views
    799

    Re: New trial for non-severe relapsing GPA

    Anyone have any experience with abatacept?

    Sent from my SM-G920V using Tapatalk
  22. Replies
    17
    Views
    1,821

    Re: Male pasient and possibilities for a baby

    Thank you. I don't remember seeing that by rtx, but perhaps I missed it. The doctors seemed to say that rtx was an advantage over cytoxin because of this side effect, but perhaps that was on account...
  23. Replies
    17
    Views
    1,821

    Re: Male pasient and possibilities for a baby

    Wishing you well. It is a lot to deal with.

    Sent from my SM-G920V using Tapatalk
  24. Replies
    17
    Views
    1,821

    Re: Male pasient and possibilities for a baby

    Hope all is well. We just got the news that it is now being said that one should not engage in fathering children when using cellcept.

    Sent from my SM-G920V using Tapatalk
  25. Thread: New Memeber

    by Aneinu
    Replies
    6
    Views
    608

    Re: New Memeber

    I think it's zuritac.

    Wishing you the best.

    Sent from my SM-G920V using Tapatalk
Results 1 to 25 of 178
Page 1 of 8 1 2 3 4