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    Aneinu is offline Registered Member
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    Thumbs up 20 year old son

    Hi all,
    I thank you for this site, as I already learned new things.
    My son was diagnosed with gpa last week.
    They did the plasmapheresis five times and they are scheduled to administer rituximab shortly.
    This has been a trying week, as we first learned the seriousness of his illness, and then we learned all the new terminology, and now we pray that the treatment will accomplish what it needs to do, and that the side effects should be minimized.
    It is good to have a place where I can dialogue his struggles and receive advice and comfort from others in similar positions.
    Thank you again
    God bless,

    Aneinu

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    Pete's Avatar
    Pete is online now Wannabe jet pilot
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    Hello Aneinu,

    Welcome to the Forum. Hope we continue to be a valuable resource to you. Feel free to ask questions (even those you think are stupid), vent your frustrations, and celebrate progress.

    Hope your son makes good progress with rituximab. What other meds is he taking? Where are you located? Where is your son being treated?

    Best to you both!
    Aneinu, Jaha, whatthewhat and 1 others like this.
    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Aneinu is offline Registered Member
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    Quote Originally Posted by Pete View Post
    Hello Aneinu,

    Welcome to the Forum. Hope we continue to be a valuable resource to you. Feel free to ask questions (even those you think are stupid), vent your frustrations, and celebrate progress.

    Hope your son makes good progress with rituximab. What other meds is he taking? Where are you located? Where is your son being treated?

    Best to you both!
    Thank you.
    We are in Cleveland.
    He is taking the steroids solu-medrol as well.
    I was being pushed to transfer him to another hospital, but firstly, I was confident with the doctors, staff and care of the one he was in, and secondly, I think the only alternative medication was the cyclophosmodine, and that didn't seem to be the correct treatment for him.
    They are looking at his craentine count in his kidneys, but they are not overly concerned.
    Thank your again.

    Sent from my SM-G920V using Tapatalk
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    Pete is online now Wannabe jet pilot
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    If you haven't done it already, you may want to check the Center for Vasculitis Care & Research at Cleveland Clinic. I see Dr Alexandra Villa Forte there. She's great. Some other folks see Dr Carol Langford who is also excellent.
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    Pete
    dx 1/11

    "Every day is a good day. Some are better than others." - unknown

    "Take your meds as directed and live your life as fully as you can." - Michael Chacey, MD

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    Aneinu is offline Registered Member
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    Quote Originally Posted by Pete View Post
    If you haven't done it already, you may want to check the Center for Vasculitis Care & Research at Cleveland Clinic. I see Dr Alexandra Villa Forte there. She's great. Some other folks see Dr Carol Langford who is also excellent.
    I hear you.
    I spent the whole day researching that.
    I was able to contact one, and for the time being, I am comfortable with our decision.
    Thank you again.

    Sent from my SM-G920V using Tapatalk
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    Birdie is offline Broken Record
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    Quote Originally Posted by Aneinu View Post
    and now we pray that the treatment will accomplish what it needs to do, and that the side effects should be minimized.
    Welcome Aneinu,

    You can relax a little bit worrying about treatment. It's very effective and usually controls Wegener's fairly quickly. Treatment will likely stop further damage long before Wegener's is under control, immediately in my case.

    So, learn as much as you possibly can about everything surrounding Wegener's and the medications and medication options. You can't know too much. You need to understand what the doctors tell you, test results, symptoms, new symptoms, also options for treatment. It's a lot to understand so come here with ANY questions. You'll get first hand experienced answers.

    We'd also welcome your son to this group if he'd like to come hang out with us.

    Gary
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    Aneinu is offline Registered Member
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    Quote Originally Posted by Birdie View Post
    Welcome Aneinu,

    You can relax a little bit worrying about treatment. It's very effective and usually controls Wegener's fairly quickly. Treatment will likely stop further damage long before Wegener's is under control, immediately in my case.

    So, learn as much as you possibly can about everything surrounding Wegener's and the medications and medication options. You can't know too much. You need to understand what the doctors tell you, test results, symptoms, new symptoms, also options for treatment. It's a lot to understand so come here with ANY questions. You'll get first hand experienced answers.

    We'd also welcome your son to this group if he'd like to come hang out with us.

    Gary
    Thank you so much.
    That is reassuring.

    Sent from my SM-G920V using Tapatalk

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    Pugdog is offline Registered Member
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    I was 22 when I was diagnosed in 1995. My kidneys failed, leading to 2 transplants. The first lasted 20 yrs. My second was this past July. Sounds like your son had an early diagnosis, which is great. I wasn't that lucky. However with medication and exercise and a healthy lifestyle I have done great make sure your son takes his medicine and that he understands the seriousness of WG and he will be fine.
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    woz
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    Hi Aneinu, welcome to the wegs family, sorry to hear that your son has wegs, but at his young age, he should bounce back quick now the doctors know what he has. The people who hang out here, are a wealth of knowledge, compassion and understanding, the more you know, the better you will feel, it's very confronting at first, but with a good team of doctors, family support, and information on hand, your son will get back to normality soon.

    All the best Woz...
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    Aneinu is offline Registered Member
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    Quote Originally Posted by Pugdog View Post
    I was 22 when I was diagnosed in 1995. My kidneys failed, leading to 2 transplants. The first lasted 20 yrs. My second was this past July. Sounds like your son had an early diagnosis, which is great. I wasn't that lucky. However with medication and exercise and a healthy lifestyle I have done great make sure your son takes his medicine and that he understands the seriousness of WG and he will be fine.
    Wow.
    Scary.
    My thoughts are with you.
    Yes, it seems they caught it just as he was beginning to bleed. Lots of blood in the lungs, but before it damaged the kidney.
    Thanks for the sound advice....Will do.

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