User Tag List

Likes Likes:  94
Page 24 of 24 FirstFirst ... 14222324
Results 231 to 234 of 234

Thread: 20 year old son

  1. #231
    Join Date
    Nov 2015
    Posts
    176
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default Re: 20 year old son

    Quote Originally Posted by Aneinu View Post
    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 travel to us this evening, but God obviously has other plans.

    Sent from my moto z4 using Tapatalk
    Hemoglobin is trending downward so they will be admitting him.

    Sent from my moto z4 using Tapatalk

  2. #232
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,044
    Post Thanks / Like
    Mentioned
    21 Post(s)
    Tagged
    0 Thread(s)

    Default Re: 20 year old son

    Quote Originally Posted by Aneinu View Post
    Hemoglobin is trending downward so they will be admitting him.

    Sent from my moto z4 using Tapatalk
    So sorry Yosef has a big flare again. I hope that being addmitted, he can get the best care possible. Must be hard to stay in the hospital those days, while we have our holidays.

    What is the treatment plan in case of a flare except from pred ? I pray for Yosef and all of you. Please update us.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  3. Likes Aneinu liked this post
  4. #233
    Join Date
    Nov 2015
    Posts
    176
    Post Thanks / Like
    Mentioned
    7 Post(s)
    Tagged
    0 Thread(s)

    Default Re: 20 year old son

    Quote Originally Posted by Alysia View Post
    So sorry Yosef has a big flare again. I hope that being addmitted, he can get the best care possible. Must be hard to stay in the hospital those days, while we have our holidays.

    What is the treatment plan in case of a flare except from pred ? I pray for Yosef and all of you. Please update us.
    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 feeling somewhat better. He has scheduled appointments today and tomorrow in Philly.

    They are thinking of doubling the dose of the Avacopan. There is also something called iv-ig which they are exploring. I'm not sure what that is. Additionally, there has been an advancement in riruximab, which may be an option for him. Dr Merkel is researching that as well.

    Sent from my moto z4 using Tapatalk

  5. Likes Alysia liked this post
  6. #234
    Join Date
    Feb 2013
    Location
    Israel
    Posts
    4,044
    Post Thanks / Like
    Mentioned
    21 Post(s)
    Tagged
    0 Thread(s)

    Default Re: 20 year old son

    Thanks for the update. Sounds like Yosef is in good hands.

    I know few weggies who get Ivig treatment.
    Read here for some explanation
    https://www.webmd.com/a-to-z-guides/...obulin-therapy

    My wg dr. Told me that in some cases Ivig in itself is the treatment for WG, and is used not only in order to help the immune system fight infections.

    I know a weggie who had a reaction to rtx so Ivig is her wg treatment. I know a weggie that no treatment helped her only Ivig and she is now in remission. I know a child who gets this treatment every couple of weeks. Side effect might be headaches but most don't have it if my "sample" of friends is enough to count on.

    So it looks promising. We pray.
    Alysia
    dx 2008


    Here, in this forum, I have found my sweet eternal love, my beautiful Phil.. :
    https://www.wegeners-granulomatosis.com/forum/threads/4238-pberggren-memorial-thread
    "You are my sunshine", he used to sing to me... "you make me happy, when skies are grey" I still answer him.
    Rest in Peace, my brave Batman and take care of your weggies from heaven, until we meet again.

  7. Likes annekat liked this post
Page 24 of 24 FirstFirst ... 14222324

Bookmarks

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •