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Thread: The scariest 14 months of my life and then Wegeners

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    Default Re: The scariest 14 months of my life and then Wegeners

    Hi Kwnorton thanks for replying and sharing. Yes please enumerate when you can. I’m not sure why they wouldn’t give you all alternative of treatment for something so serious as soon as they could. Im reading your experience and I’m shaking. Just the though of ICU and tubbing. How are you feeling now? Are you getting Rtx ?

    And yes I did a very detailed post because when I read the majority of the stories when I recently enter the forums, I wished I could read how it started if you guys went emotionally stressed like I did. Im sorry guys if it was a lot I just needed to vent too. And like you guys say in some post, no one understands how you feel. You want to open a topic and you look so healthy that everyone just looks at you like nothing is really wrong 😞. It’s so overwhelming to try to explain how bad you feel and how good you look.

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    Default Re: The scariest 14 months of my life and then Wegeners

    Hi Richard052018, thank you so much for your reply. You made my eyes watery. I will pray hard for more time for all of us too. I’m so happy your lungs are cleared and your hemmorage. Thanks for your good wishes.

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    Default Re: The scariest 14 months of my life and then Wegeners

    Quote Originally Posted by Vero84 View Post
    Im sorry John that you went through the same thing, and on Christmas time, oh my! Believe me when I say I could understand what you went through now. Like the energizer bunny is right  I cannot take a rest at times, this Prednisone has me going and going. Lol. Hoping you are doing okay.
    I am off odf the prednisone now, thank God. I sleep better and go better and I've lost some weight, including the moon face.

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    Default Re: The scariest 14 months of my life and then Wegeners

    Quote Originally Posted by Vero84 View Post
    Hi Kwnorton thanks for replying and sharing. Yes please enumerate when you can. I’m not sure why they wouldn’t give you all alternative of treatment for something so serious as soon as they could. Im reading your experience and I’m shaking. Just the though of ICU and tubbing. How are you feeling now? Are you getting Rtx ?

    And yes I did a very detailed post because when I read the majority of the stories when I recently enter the forums, I wished I could read how it started if you guys went emotionally stressed like I did. Im sorry guys if it was a lot I just needed to vent too. And like you guys say in some post, no one understands how you feel. You want to open a topic and you look so healthy that everyone just looks at you like nothing is really wrong . It’s so overwhelming to try to explain how bad you feel and how good you look.
    Please dont be sorry for sharing your feelings. We understand and we care and we are here for you. Welcome to the family Veronica.
    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.

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    Default Re: The scariest 14 months of my life and then Wegeners

    Welcome Veronica,
    Michelle is correct, pred causes real mood swings. I didn't seem to suffer with this side from 17 until my mid 30's, but since then (I'm now 41) Pred drives me crazy! Plus you also have genuine reasons to be stressed.

    We all need to keep a close eye on our health, but when I hear that people have kidney involvement, the alarm bells really start to ring.
    Diagnosed April 1995

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    Default Re: The scariest 14 months of my life and then Wegeners

    Quote Originally Posted by Vero84 View Post
    Hi Kwnorton thanks for replying and sharing. Yes please enumerate when you can. I’m not sure why they wouldn’t give you all alternative of treatment for something so serious as soon as they could. Im reading your experience and I’m shaking. Just the though of ICU and tubbing. How are you feeling now? Are you getting Rtx ?

    And yes I did a very detailed post because when I read the majority of the stories when I recently enter the forums, I wished I could read how it started if you guys went emotionally stressed like I did. Im sorry guys if it was a lot I just needed to vent too. And like you guys say in some post, no one understands how you feel. You want to open a topic and you look so healthy that everyone just looks at you like nothing is really wrong . It’s so overwhelming to try to explain how bad you feel and how good you look.
    It is difficult to understand why they would not treat a patient with seizures (of “unknown” origin) but in a patient with a clear history of CNS/brain Vasculitis successfully treated with RTX (plus 20+ year systemic Vasculitis history), prophylactically with Rituxan along with anti-seizure drugs. My fancy Vanderbilt Neurologist (a seizure “expert”) still doesn’t get the link. Says he doesn’t know “anything” about Vasculitis! Guess not!
    Illusrates that unless we patients are educated, informed, conscious and breathing enough to diagnosis our own flares we may remain untreated. It is now almost 7 months later that I’m returning to my Los Angeles Rheumatologist who recognizes right off the bat that this is CNS vasculitis relapse and writes an immediate order for RTX. I will likely begin infusions next week.
    I’m thinking of writing a book on my family’s roller coaster ride with Vasculitis. Not sure anyone would read it but it may be good therapy.

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    Default Re: The scariest 14 months of my life and then Wegeners

    Quote Originally Posted by John S View Post
    I am off odf the prednisone now, thank God. I sleep better and go better and I've lost some weight, including the moon face.
    Thank God you are off the Prednisone. I have gained so much weight in 2 months. The moon face John! The moon face it’s bad! But im tapped down to 30mg this week. I feel better already. I’m not craving to eat every hour thank God. My knees hurt a litlle still and I’m scared to jump in the machine to start exercising just yet but I really want to start working out soon. I’m cheering to be off of these meds soon.

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    Default Re: The scariest 14 months of my life and then Wegeners

    Quote Originally Posted by Alysia View Post
    Please dont be sorry for sharing your feelings. We understand and we care and we are here for you. Welcome to the family Veronica.
    Thanks so much Alysia 😘🙏🏻

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    Default Re: The scariest 14 months of my life and then Wegeners

    Quote Originally Posted by gilders View Post
    Welcome Veronica,
    Michelle is correct, pred causes real mood swings. I didn't seem to suffer with this side from 17 until my mid 30's, but since then (I'm now 41) Pred drives me crazy! Plus you also have genuine reasons to be stressed.

    We all need to keep a close eye on our health, but when I hear that people have kidney involvement, the alarm bells really start to ring.

    Hi Gilders, thanks for writing. I know I’m getting to understand Prednisone now, it’s a very strong medication. Who knew this pill will have so much different effects on someone. It’s horrible! I get acne too on my chest and like I said having to be so fit, back in my normal life and so healthy, mentally emotionally this easily can throw you off.
    Kidneys were fine for months after my first flair back in May, just in September blood work showed something, I feel if they had put me in treatment sooner none of this would had happened. I was so stressed at the fact that they had me with no clear diagnosis for months. Now my kidneys are at 50% working only and i have to be really careful. And like the doctor sais... wait... wait for it to all get better. Unfortunately yes it rings a big bell. I’m scared truly.

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    Default Re: The scariest 14 months of my life and then Wegeners

    Quote Originally Posted by [email protected] View Post
    It is difficult to understand why they would not treat a patient with seizures (of “unknown” origin) but in a patient with a clear history of CNS/brain Vasculitis successfully treated with RTX (plus 20+ year systemic Vasculitis history), prophylactically with Rituxan along with anti-seizure drugs. My fancy Vanderbilt Neurologist (a seizure “expert”) still doesn’t get the link. Says he doesn’t know “anything” about Vasculitis! Guess not!
    Illusrates that unless we patients are educated, informed, conscious and breathing enough to diagnosis our own flares we may remain untreated. It is now almost 7 months later that I’m returning to my Los Angeles Rheumatologist who recognizes right off the bat that this is CNS vasculitis relapse and writes an immediate order for RTX. I will likely begin infusions next week.
    I’m thinking of writing a book on my family’s roller coaster ride with Vasculitis. Not sure anyone would read it but it may be good therapy.
    I am so mad for you, because it so relates to me at the beginning as well. I was so defensive for the last months before the last hospitalization, because I remember I was with my first flare and my mother had given me a cane to support my weight bc I couldn’t walk. And I go to this stupid Rheumatologist lady in Queens, NY and she sais to me “go home with 10mg of Prednisone. Come back in 2 weeks for results of blood”. Sents me to a Shoulders nerve test next door and 2 days later I was with lesions on my legs and almost at 100% body paralyzed. Tell me how could they do that to serious ill patients. Once I get to the hospital a Rheumatologist in the ER tells me “why would she put you only on 10mg? Is she crazy? I’m mentally broken kwnorton. We have to understand that we have to do the research ourselves if we want good doctors that know what they are doing! After what happened I learned that I have to make my own research. And it shouldn’t be like this, but we have to do it ourselves if we want to do it right. And this is why I’m so defensive in doctors telling me anything this days. I mean I work in the medical field and thank God I know a lil bit how to get in my ways, but what about the people who are going through this with no sence in how to start. It’s so scary. I feel for you so much. You will see all will be okay after you get that treatment. I’m still upset they haven’t rushed you yet. This is so important to start STAT. I would definitely read your book! It will make me cry I know but it will make us stronger. I need a good Psychiatrist too, I need to get on that next week.

    Best of luck ❤️ Keep us posted

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