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Thread: OT June Chit Chat

  1. #51
    Distinguished Community Member Howie's Avatar
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    WHOOOOO, me?

    What's messing things up is taking naps. Again, I was up at 4:00 after going to bed at 2:00. But look at how long I napped. It I stayed up until 2, but didn't take a nap, I could get up at 10 after getting 8 hours of sleep.

    I'm going to get back into that routine, and no naps today. By the end of this weekend, I want to be nap free, and getting up at 10 every day.

    I have to go to the bank this morning to deposit enough to cover everything. Then I'll have to stretch everything till next payday. Property tax and that battery wiped me out.

    My brother will call tonight, that's usually the high spot of my week. Have a great weekend everyone!
    Evolution spans the Universe.

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  3. #52
    Distinguished Community Member Cherie's Avatar
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    Well...I reached out to my neuro yesterday and he is having IVIg ordered for 2 days at the end of next week when I get back from my next trip to DC. Hope that gives me the oomph I need to move graciously through summer (I started to type "slog").

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  5. #53
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    "Slog" is the correct verb for how most of us get through summer!

    ANN
    Last edited by stillstANNding; 06-08-2018 at 01:35 PM. Reason: Wrong part of speech. It's a hot day.
    There comes a time when silence is betrayal.- MLK

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  7. #54
    Distinguished Community Member Howie's Avatar
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    I watch a TV show called Dual Survivor. 2 guys go into all kinds of wild places, and have to find water, and food to survive. They come up with all kinds of ways to get both, and it's made to think it's just these 2 guys.

    But who is filming them every step? If all else fails, they can just eat and drink what the film crew is having. But you're not supposed to think that, they want you to worry about how these two guys will survive.

    I still watch it whenever it's on, but I'm wringing my hands, worried about how they will survive. I'm the perfect fan, a bad brain, who won't ask these embarrassing questions.
    Last edited by Howie; 06-08-2018 at 07:56 AM.
    Evolution spans the Universe.

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  9. #55
    Distinguished Community Member Sunshine's Avatar
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    Quote Originally Posted by Cherie View Post
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    Well...I reached out to my neuro yesterday and he is having IVIg ordered for 2 days at the end of next week when I get back from my next trip to DC. Hope that gives me the oomph I need to move graciously through summer (I started to type "slog").
    I didnít know you were looking into IVIG. I do 30G at 30ml per hour rate. It takes 7.5 hours. Any faster, I get hard side effects.

    Laz used to do IVIG too

    What brought you to IVIG?

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  11. #56
    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by Sunshine View Post
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    I didn’t know you were looking into IVIG. I do 30G at 30ml per hour rate. It takes 7.5 hours. Any faster, I get hard side effects.

    Laz used to do IVIG too

    What brought you to IVIG?
    Hi,
    That is just what I was thinking. Cherie, it sounds like you are using IVIg as a short term “fix”....I used to get hour long infusions of methyl prednisolone. I did this once a month for years. It kept me working and full of energy. Are you using the IVIg like that?

    Sunshine, I did 70g in 7 hours. Twice a month. Is that the protocol you are using? Just wondered and I forgot what you said.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  13. #57
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    Cherie, are you still doing Rituxan in addition to IVIg?

    Peg, congratulations on shedding the cast. Howie, congratulations on getting your new car battery installed. May it last a long time.
    Virginia

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  15. #58
    Distinguished Community Member Sunshine's Avatar
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    Quote Originally Posted by Lazarus View Post
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    Hi,
    That is just what I was thinking. Cherie, it sounds like you are using IVIg as a short term “fix”....I used to get hour long infusions of methyl prednisolone. I did this once a month for years. It kept me working and full of energy. Are you using the IVIg like that?

    Sunshine, I did 70g in 7 hours. Twice a month. Is that the protocol you are using? Just wondered and I forgot what you said.

    I do 30G in 7.5 hours. Every other week. He tried to increase the rate, but it creating severe spasms, my lower legs and feet twisted inward, like Exorcist.

    So, to increase the 30G dose, would have to do it 2 days each time. No thanks.

    Am sure he would go that route and maybe also titration of Ativan, if I worsen.

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  17. #59
    Distinguished Community Member Cherie's Avatar
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    Quote Originally Posted by Sunshine View Post
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    I didn’t know you were looking into IVIG. I do 30G at 30ml per hour rate. It takes 7.5 hours. Any faster, I get hard side effects.

    Laz used to do IVIG too

    What brought you to IVIG?
    I have been using it now since 2009 off and on when I need a boost. Three days at a time has been the usual course but I find that after dose 2 I often run a fever for several hours so have stopped doing the third dose which compounds the achiness and temp elevation. A single dose , for me, does nothing even on a monthly basis. And I hate to stress the insurance system at $45,000/dose more than I need to. I get 300 mg over 6 hours each time and tolerate it well. Ativan? I take 650 mg tylenol and 25 mg Benadryl orally prior to each dose and don't have problems.
    Last edited by Cherie; 06-08-2018 at 02:50 PM.

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  19. #60
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    Is this in addition to Rituxan?
    Virginia

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