[SandyC]

Lately Jim has been having increased muscle spasms. We are not sure if his Baclofen or Tizanidine has stopped working, if the Beta is causing it or the weather. Love this disease and the questions that follow.

I have been increasing his Beta lately because it seems when he gets to a full dose things go down hill. He's been trying for about two years to get to a full dose but we never seem to be able to get there. I have him at 3/4 dose right now.

Yesterday he had 3/4 dose and his body did not react well. Have you ever seen someone who's body contorts? That's what Jim's is doing. His arms cramp up, his spine wants to go sideways and his legs bunch up.

So I increased his Baclofen and gave him an extra Tizanidine and it calmed the spasms down. But then he was too weak to do anything, he said he felt like jello.

What's your story? Did Beta do this to you too? Did your meds stop working? He's been on Baclofen since diagnosis and Tizanidine for about 7 years. He will be seeing his spinal cord doctor on Thursday and we'll give a call to his neuro before then as well.

Thanks!

[barb02]

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.

[SandyC]

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.

[Kitty]

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.

[SandyC]

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?

[Kitty]

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.

[AfterMyNap]

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?

[SandyC]

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.

[TwoKidsTwoCats]

Sandy, you didn't mention if you give Jim something like ibuprofen before giving the Beta. I ask because if I don't premedicate with ibuprofen or acetaminophen, about 3 to 4 hours after the injection I get this overwhelming urge to stretch and when I do my back and side muscles give me fits. Immediately after that I have uncontrollable chills, but no fever. I did the same thing with Copaxone.

[AfterMyNap]

Originally Posted by SandyC

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.

It really depends on the day for me, I have carte blanche on dosing and I go through 150+ 2mg tiz and 90+ 10mg bac every month.

The highest dose of tiz I've taken so far is 10mg at 4 hours along with 10mg bac at the other 4th hour. I can only handle those mega doses if there are no productive plans, it makes me a little spacey.

I agree with Jim about the pump, while many have felt it is a miracle for them, I'm still quite reluctant to do it for the same reasons as Jim's. Also because I don't want to be forced to go in for the routine fills— particularly in foul winter weather.

I totally sympathize with the sensitivity to cold; in it, I go stiff as a board (and not light as a feather ) from head to toe and literally can't move or bend anything. This freakin' disease is such a crapshoot!