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Thread: Gave Up on Facebook Groups

  1. #1
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    Default Gave Up on Facebook Groups

    Hello All,
    My name is Larry. I am 69 years old and live in Florida. I was DX in June of 2017. Nearly died. Spent 4 months (March-June) in pain going to several doctors with no DX. On the last day of June, I was told my kidneys were in complete failure and I should go to the ER. Spent 3 weeks in the hospital and the next several years recovering. I am currently in remission. I was a member of several Facebook groups for WG and CKD but got tired and fed up with FB so I terminated my account. Hope to share some experiences and thoughts with you all.

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  3. #2
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    Default Re: Gave Up on Facebook Groups

    Hi Larry!
    Good to have you here. I tend to stay away from FB myself these days although my account is still active. Glad you're in remission though after all that. How's your kidney function looking? I had kidney involvement too. Mine hovers between 40% and 50% most of the time.

    Cheers
    Andrew
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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  5. #3
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    Default Re: Gave Up on Facebook Groups

    Good to see you here Larry. This is a great community of knowlegable and supportive people. I myself have never used Facebook group for WG.

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    Default Re: Gave Up on Facebook Groups

    Quote Originally Posted by andrew View Post
    Hi Larry!
    Good to have you here. I tend to stay away from FB myself these days although my account is still active. Glad you're in remission though after all that. How's your kidney function looking? I had kidney involvement too. Mine hovers between 40% and 50% most of the time.

    Cheers
    Andrew

    A few months ago I tried setting up a Facebook account to access some help on a diabetic forum but was expelled by Facebook after a few minutes for reasons I never understood. I used the same info I used here to gain access this forum with different log in but Facebook said I didn't meet their standards or some such reason. I had never used it before so didn't really mind not having access to it but thought it was ridiculous to ban me. A grandson in computer science told me maybe they doubted I could be a real person since I didn't have any Facebook presence or history. It just reinforced my animosity toward Facebook.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Gave Up on Facebook Groups

    Quote Originally Posted by drz View Post
    A few months ago I tried setting up a Facebook account to access some help on a diabetic forum but was expelled by Facebook after a few minutes for reasons I never understood. I used the same info I used here to gain access this forum with different log in but Facebook said I didn't meet their standards or some such reason. I had never used it before so didn't really mind not having access to it but thought it was ridiculous to ban me. A grandson in computer science told me maybe they doubted I could be a real person since I didn't have any Facebook presence or history. It just reinforced my animosity toward Facebook.
    Yeah no one knows how they assess things but it seems odd that they stopped you immediately. You're not missing much though
    Forum Administrator
    Diagnosed March 2003.
    Currently but not permanetly residing in Canberra, Australia.

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    Default Re: Gave Up on Facebook Groups

    Yeah, Facebook is not really a great resource for in-depth analyses of rare diseases. More likely than not, you’ll get roped into a group trying to sell you Activated Water or something (there are lobby groups which hijack sickness groups and forums for just such purposes).

    Glad to hear you’re in remission, are you still on meds, or are you being tapered down?
    Life lessons for all of us;

    Never eat at a place called Ma’s.
    Never shoot pool with a guy called Pop.
    Never try to eat anything bigger than your head.

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    Default Re: Gave Up on Facebook Groups

    Quote Originally Posted by andrew View Post
    Yeah no one knows how they assess things but it seems odd that they stopped you immediately. You're not missing much though
    I appealed their ban but they confirmed it and said it could not be appealed but no reasons or explanation was ever given and said their decision was final. What I think is ironic thousands of fake accounts are set up and used every day for political purposes by countries pursuing their political cyber warfare.
    Knowledge is power! Wisdom is using it to make good decisions!

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    Default Re: Gave Up on Facebook Groups

    When I checked in to the hospital in 2017, my creatinine was 8 and my GFR was 6. I did dialysis for a year and when I came off, my creatinine was around 3.5. It started getting a little better over time and it has been anywhere from 2.14 to 2.8 over the past 2 years. So my GFR has fluctuated between 23% to 30%. I'm ok with that and just hope it stays there for a long time.

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    Default Re: Gave Up on Facebook Groups

    Quote Originally Posted by Peter Marsham View Post
    Yeah, Facebook is not really a great resource for in-depth analyses of rare diseases. More likely than not, you’ll get roped into a group trying to sell you Activated Water or something (there are lobby groups which hijack sickness groups and forums for just such purposes).

    Glad to hear you’re in remission, are you still on meds, or are you being tapered down?
    I was very lucky that my Nephrologist is very knowledgeable about WG and he manages both diseases for me. He had me stop the Prednisone and Azathioprine in Sept 2019. My Anca was negative at that time and my kidneys had healed enough to where he was happy. He is not a believer in the Rituxan every 6 months. His quote to me was, "why would I give you a drug that is going to kill your immune system and make you susceptible to infection when you don't need it?" When I was on the FB group for WG, most people on there were getting the Rituxan every six months as a maintenance drug.

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  17. #10
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    Default Re: Gave Up on Facebook Groups

    Nice to hear you’re getting off the drugs! Your nephrologist is right, there’s no point giving an immunosuppressant if there’s no need. The Rituxan infusions pretty much come down to individual cases and the particular doctor you’re seeing. Keep in mind, though, we’re trying to fight our own immune system and stop it killing us, so I’m willing to get an occasional maintenance therapy if my rheumy recommends it (and always hoping the next one may be the last one). I can’t wait to hear my guy say the same thing to me.

    stay well, hope those kidneys keep improving.
    Life lessons for all of us;

    Never eat at a place called Ma’s.
    Never shoot pool with a guy called Pop.
    Never try to eat anything bigger than your head.

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