Good Grief!

Here I was thinking my spasticity was lessened, until I read everyone else's dosages!
I do 40-60 mg a day of Baclofen and 4-8 mg of Zanaflex when I go to bed.

I cut baclofen out completely this summer when I was sick with salmonella, along with the zanaflex and my provigil. I couldn't keep them down and the illness was worse than the spazzing and I wasn't getting up and walking for two weeks anyway!

I told the neuro about it and he said to add them back as needed. I hoped that I would be able to cut them out completely, but nooooo. I added the baclofen back, starting at 10 mg, but worked up to previous dose within a month or so. Ditto with the zanaflex. I have more days when I only need 4 mg of the zanaflex, but on those days when I wake up swearing and groaning with leg or hand spasms, I'll do another 4 mg tab. I have to take the baclofen as soon as I get up. I do stretching every day before I get out of bed, but I still walk stiffly until I get going. There's still days when the spasms are right at the edge of my consciousness, waiting to spring on me if I make a wrong move. There's days when the spasms don't let go for days and I feel like I got hit by a car or that my hands got caught in a wringer. I have a splint that I got when I had IVSM one time, I use that to immobilize my hand when the wringer feeling happens.

The pain will be there for days and then all of a sudden...the spasms are gone, until the next round.

My neuro told me to take both the baclofen and the zanaflex (and the provigil!) as needed but to let him know when I get to a certain amount of each.

I'd been on 10 mg three times a day of Baclofen until a month ago, when my neuro upped my dose by 10 mg a day. So, now I take 10 mg in the morning, 20 mg in the afternoon, and 10 mg in the evening.

A couple of months ago I tried to decrease the Baclofen, but the muscle spasms came back almost immediately in my legs. I have dreams of getting off all prescription medications some day, but I also have a low tolerance for pain!

Hi Kelly,

I took 10 mg 4x a day, but I could have used 20 mg in the late afternoon when the symptoms got worse. It really helped me a lot. I took it for about 18 months or so while I was finishing my degree and I had to sit and read and write papers and didn't get up to move around much.

For me it was a Godsend and I hope it works well for you when you get to a dosage level that eases your pain.

I think you make a good point, Wiz. Sometimes it is the lack of stretching, etc. that causes this symptom, and it can let up for months/years when we change our routines.

Also, Kelly, try to notice if it happens once a month, for about a week. I get one bum leg, right where you are talking, at PMS time every month. For me it is sciatica though, and I've had it since the mid-80's (before MS). It used to be the whole leg, but now it is mostly just behind the knee.

Cherie

Mine's behind the knee, too....but it's pretty much all the time and it wasn't around pre-MS. If I stoop down to look under the bed or pick something up it really hurts trying to get back up. The baclofen helps so I'm assuming it's spasticity. I have it in my right hand, too, and sometimes my left hand but not as often. Seems everything happens on the right side for me.

I was taking 10 mg in the a.m. and 20 mg before I went to bed. The neuro said that I should adjust the timing of the dose so that it helped the most when I needed it most. My bad time was in the a.m., so that's why the night time dose was higher.

I, too, tried to wean off it to find out if the spasticity was still there and had a horrible time with spasms. I finally was able to get off it and ended up only with bad tightness in both of my calves--it doesn't go away with stretching either.

It's worse on my right side. But when my back spasmed, man everything was crazy. My reflexes were all nuts. I've NEVER seen anything like it before. The doc was lucky I didn't kick him in the by accident!

Hope you get some relief soon.

Wow, people take a high dose of baclofen! I was watching a video yesterday that scared me about it...that it can damage your liver.
I just got a new script for 5 mg in morning and afternoon and 10 mg at night...but it's not helping...as the day wears on, the spasticity gets worse.
I do notice that stretching my legs and back helps...I have exercises for all of the tight parts of my body...so that's part of the daily routine (when I remember to stretch, that is).
I thought that there was some posts back when about Mary Jane helping with spasticity and pain...haven't asked the neuro about that yet, esp since it hasn't been legalized for medical purposes yet in this state. I do have friends in low places that could help me with obtaining it if I wanted to...lol...but I'm kind of afraid to go that route.
Kitty, hope you find some relief...call your dr. you need to get a handle on this pronto. Good luck...let us know how you're doing

Hi Kelly, I am now taking 30mg 3 x a day and can add another 10 at night if I feel I need it.

When I go back to the Neuro in Feb we are going to talk about changing it for at that time I will have been on Baclofen for well over 2 1/2 months. He feels that over a long period of time your body gets immune to it and you need to switch to something else.

How are you feeling now?

Well, I tried Motrin yesterday instead of the Baclofen and it actually worked better. My leg is much better today but all day yesterday I had back spasms on the right side. Felt like a really bad pulled muscle but this morning it's almost gone.

Since nothing hurts too much this morning I might just lay off the meds for a day and see what crops up. If something starts to give me trouble I may just see if Motrin will take care of it. I still have my prescription for Baclofen, though...at least it's one of the ones on the $4 generic list!

I've heard that too!