Baclofen Question

[Citlalli]

Wondering how other people feel in between doses of Baclofen. I started out taking 10 mg every 6 hours (3 x a day) but about a month ago felt it wearing off sooner, so now take it every 4 or 5 (4 x a day--10, 2, 6/7 and midnight).

Now the last hour before I'm due to take it again my legs start to cramp up and ache and my upper arms feel weak and achy (so about 3 hours after I take it).

My stiffness and cramps really ramp up towards 6 PM.

I'm worried that I'm becoming tolerant to the drug and I wonder if these symptoms are because of the medication or are just a window into my underlying spasticity.

I tolerate the drug really well and it works in 20-30 minutes. I always feel when it kicks in; it just isn't fully covering my spasticity. I've tried to pull back to check that,
but then muscles spasms are much worse.

Anyone else have experience like this with Baclofen? I'm afraid to take more, though a few times I've added an extra dose mid-evening, like 9 PM. I go to bed late, so need the last dose to be at midnight to avoid night cramps.

[rdmc]

I don't know about developing a tolerance...but I do know that spasticity (at least for me) can change from day to day, week to week. I have a pump now, so I'm getting a steady dose of the Baclofen, and yet some days my spasticity will be worse than others (you don't want to completely eliminate spasticity...you might fall if you do, it can make your legs too weak.)

Call your neuro if you think more would help you...the maximum dose is 80 mg per day (at least that's what the literature says.)

Don't increase it on your own because, if I remember correctly, you need to titrate up the dose, so many mgs for so many days, etc. Same with going off it, you have to back down slowly.

I've heard some folks on the board say that their neuro adds Zanaflex to the Baclofen, so you might want to ask your neuro about that.

As far as feeling the effects when it wears off...when I was on oral Baclofen that was my story. I would never have had to look at a clock, my body would tell me when the effects of the last dose had worn off. For me it was usually in the 4-5 hour range.

Call your neuro and see what they say about upping the dose.

[Shashi]

I think you can build up a tolerance to baclofen. Years ago when I started taking it, I started out at 10 mg a day. Over the following four years, I gradually had to increase it up to 80 mg a day (20 mg four times a day.) I was actually able to wean off of it last winter for about four or five months, but during a flare last spring, had to start taking it again. I'm currently taking 20 mg three times a day, though there are times when I need to add an additional 20 mg. (like I have this past week.)

I know the highest recommended dosage is 80 mg a day, though there are those here who are taking more. Some are also using a baclofen pump to deliver the medication directly into the body. You might talk with your doctors about increasing your dosage and what your other options might be.

Hugs,

Lisa

[Citlalli]

"...when I was on oral Baclofen... I would never have had to look at a clock, my body would tell me when the effects of the last dose had worn off."

That's the part that's news to me. I've been on it now for 4 months and am finding it hard to believe that without this blessed drug I'm in such horrible shape.

I guess I'm wondering whether it's smart to narrow the window between doses so that I/we don't have that creepy hour every day where you get to see how bad it feels to be without it.

I know I have to ask my doctor; the problem is I already have and she just says to play around with the dosage. I'm seeing a new neuro next week and will ask him. Some times I worry that the Baclofen itself is making me worse.

Thanks to both of you for your quick responses!

[rdmc]

Why do you think the Baclofen is making you worse?

[Citlalli]

It might not be the Baclofen, but over the past month my spasticity has escalated (more pain building earlier in the day to a louder crescendo, and affecting my left arm as well as my legs, which had never happened before). Could be the weather (colder), or underlying fatigue, or just the plain old plain old underlying process kicking in.

Guess I was wondering out loud here whether anyone else has the experience of the body calling out for Baclofen and if so, whether that means it isn't working right or that perhaps a higher dose is needed.

After putting up this thread I decided to try taking 15 mg instead of 10 at 6 PM and it really lessened the pain in my thighs. So maybe I haven't been taking enough?

Of course, after four months of this (with very intense basically unbearable night spasms), I've really been hoping that this whole thing would go away.