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Old 04-04-2010, 10:25 AM #1
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Sandy, I am sorry to hear that Jim is having a rough time. I am up to 60 mg of baclofen, and I am not sure if it is helping at all. I have never been sure. But I am afraid to stop taking it in order to judge its usefulness. Maybe it is time for a beta holiday to see if his spasms lessen.
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Old 04-04-2010, 10:43 AM #2
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Yeah, we've done the break before and he did OK but we're still contemplating the Baclofen as well. His spasms have become worse and worse. Tomorrow he starts his full dose so we'll see if it happens again. If it does we'll for sure know it's the Beta because so far today he's not having the contorting.
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Old 04-04-2010, 11:11 AM #3
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Sorry Jim is not feeling well. Those spasms can be torturous.

Has Jim ever considered giving LDN a try? It helps with the sx.....but I think he takes some narcotic meds (?) so that may prevent him from trying it. Some people get tremendous relief from their sx and some only get minimal help. It's just an individual thing.

I took Beta for a while but had such bad reactions to it that I stopped. My MRI's were not stable, either, so I knew it wasn't working for me.

Maybe he's built up a resistance to Baclofen. He's been on that med a while, hasn't he? Maybe time for something stronger. I have taken Baclofen but it makes me so loopy that I stopped. Aleve does about as much good as Baclofen did for me without the side effects.

You're so good to him, Sandy. All people who need assistance should be so fortunate.
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Old 04-04-2010, 11:41 AM #4
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He's been on Beta before but was switched to Copax and then Avonex. Now back to Beta. I am beginning to think none of them work but he keeps taking them just in case you know?
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Old 04-04-2010, 03:44 PM #5
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Sandy, all the articles I've read about the CRABS state that they only have something like a 30% chance of possibly delaying progression. They made me so sick that small percentage just wasn't worth it to me. Those that they do help are fortunate.
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Old 04-04-2010, 06:35 PM #6
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When I started B, I spent a few days literally flopped (full doses per). I'm guessing that he ought to go a few days (shots) on the full dose to see if he levels off. After the first few shots, I had no more physical reactions to Beta.

Does he alternate between Bac and Tiz during the course of a day? I've been doing it for a couple years and it seems to work better for me, but my neuro is leaning for the pump and I'm not. Up the MMJ?
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Old 04-04-2010, 07:15 PM #7
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Cindy, he has up'd the mmj and it works better than anything else. We've been noticing the contorting the past month or so. Mainly when he gets cold. This time he wasn't cold and it was about four hours after the shot.

I gave him Tiz this time with no extra Baclofen and so far so good. He says his body feels tight though so maybe we could look into alternating. How much are you taking? Jim's on 20mgs three times a day for Bac and 8mgs three times a day for Tiz.

Jim's spinal doc is not a fan of the pump for several reasons. Mainly infection. Not sure how the neuro feels. Jim wont ask because he's not a fan either.
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