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10-19-2019, 04:39 AM
#231
Re: 20 year old son
Originally Posted by
Aneinu
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.
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Hemoglobin is trending downward so they will be admitting him.
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10-20-2019, 03:33 AM
#232
Re: 20 year old son
Originally Posted by
Aneinu
Hemoglobin is trending downward so they will be admitting him.
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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.
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10-24-2019, 01:48 AM
#233
Re: 20 year old son
Originally Posted by
Alysia
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.
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10-25-2019, 04:28 AM
#234
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.
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