Kira
07-15-2008, 09:44 PM
I have been taking baclofen for spasticity since January (about 6-7 months). At first, it was great and really helped loosen up the spasticity in my calves, L hamstring, and L hip adductors.
I function a lot better when the Baclofen is working, because my leg is much looser and I can walk better (with a 4-wheeled walker/rollator)... though the Baclofen and reduction in spasticity doesn't do much of anything for my pain. And it doesn't do anything for the "tightness" I have in my upper body from scarring & calcification after repeated attacks of rhabdomyolysis... because that isn't actual spasms but rather tight, calcified scar tissue. But it does work for the actual spasticity/rigidity in my L leg and R calf, which my doctors think is coming from CNS stuff (like the kind people get from MS, cerebral palsy, etc.).
When I first started taking the Baclofen, it worked great, even at very low doses (5-10 mg). But now, at 15 mg 2-3 times per day, it isn't doing much at all. I know that you can develop tolerance to it, and I will definitely talk with my doc about it at the next pain clinic appt. My question, though, is about dealing with Baclofen tolerance.
One obvious option is to increase the dosing and/or frequency. I would rather not increase the dose if I can avoid it, because I am really trying to keep my med doses as low as I can. I am on a lot of different meds, due to all of the stuff mito does to different organ systems, and a few of my meds can cause drowsiness/brain fog... so I would like to minimize that if I can. But, if I need to do a dose increase to keep my legs loose enough to be able to walk relatively normally, then of course I will do it. I have no idea what would be a "high" Baclofen dose for an adult, but have the feeling that I've got lots of room to go up if I need to. I'm not going to change the dose without talking to my doc, but would like an idea of what is a reasonable dose vs a high dose before I talk to her.
I have also heard a few people talk about doing "drug holidays" from Baclofen to make it work again. I am wondering if anyone has tried the "drug holiday" thing, and how long you need to do it for, etc. (I would talk to my pain doc before doing this, too).
The other thing I've heard about is Baclofen pumps. That would obviously be a long way off, since I have the feeling that there is still considerable wiggle room with my oral dose. But I know very little about Baclofen pumps and am curious about what makes you a candidate for this.
Are there other muscle relaxants that work similarly, without cross-tolerance issues? A lot of muscle relaxants don't work for me (flexeril, skelaxin, robaxin)... Klonopin worked a bit as a muscle relaxant for me, though it was an unexpected side effect since it was prescribed for anxiety. My pain doc explained about the different mechanisms and that it makes sense that the Baclofen/Benzos/etc would work better. Would Zanaflex also be an option? Is there an issue of cross-tolerance?
The only other thing I've heard about doing is Botox, but don't know much about that with relation to all of my other health stuff. I haven't looked into it very much at all.
In the short-term, it will probably be as simple as raising my dose slightly at the next pain clinic appointment. But, if tolerance is going to be an issue every few months, I know that I will eventually get to the point where dose increases aren't going to be as reasonable... and I am just wondering about other options and how this is managed. I would like to keep my leg muscles loose enough to walk (with a walker) and to avoid contractures, etc... so it is important to keep the spasticity to a minimum.
Thanks for reading this llllonnnggg post...
I function a lot better when the Baclofen is working, because my leg is much looser and I can walk better (with a 4-wheeled walker/rollator)... though the Baclofen and reduction in spasticity doesn't do much of anything for my pain. And it doesn't do anything for the "tightness" I have in my upper body from scarring & calcification after repeated attacks of rhabdomyolysis... because that isn't actual spasms but rather tight, calcified scar tissue. But it does work for the actual spasticity/rigidity in my L leg and R calf, which my doctors think is coming from CNS stuff (like the kind people get from MS, cerebral palsy, etc.).
When I first started taking the Baclofen, it worked great, even at very low doses (5-10 mg). But now, at 15 mg 2-3 times per day, it isn't doing much at all. I know that you can develop tolerance to it, and I will definitely talk with my doc about it at the next pain clinic appt. My question, though, is about dealing with Baclofen tolerance.
One obvious option is to increase the dosing and/or frequency. I would rather not increase the dose if I can avoid it, because I am really trying to keep my med doses as low as I can. I am on a lot of different meds, due to all of the stuff mito does to different organ systems, and a few of my meds can cause drowsiness/brain fog... so I would like to minimize that if I can. But, if I need to do a dose increase to keep my legs loose enough to be able to walk relatively normally, then of course I will do it. I have no idea what would be a "high" Baclofen dose for an adult, but have the feeling that I've got lots of room to go up if I need to. I'm not going to change the dose without talking to my doc, but would like an idea of what is a reasonable dose vs a high dose before I talk to her.
I have also heard a few people talk about doing "drug holidays" from Baclofen to make it work again. I am wondering if anyone has tried the "drug holiday" thing, and how long you need to do it for, etc. (I would talk to my pain doc before doing this, too).
The other thing I've heard about is Baclofen pumps. That would obviously be a long way off, since I have the feeling that there is still considerable wiggle room with my oral dose. But I know very little about Baclofen pumps and am curious about what makes you a candidate for this.
Are there other muscle relaxants that work similarly, without cross-tolerance issues? A lot of muscle relaxants don't work for me (flexeril, skelaxin, robaxin)... Klonopin worked a bit as a muscle relaxant for me, though it was an unexpected side effect since it was prescribed for anxiety. My pain doc explained about the different mechanisms and that it makes sense that the Baclofen/Benzos/etc would work better. Would Zanaflex also be an option? Is there an issue of cross-tolerance?
The only other thing I've heard about doing is Botox, but don't know much about that with relation to all of my other health stuff. I haven't looked into it very much at all.
In the short-term, it will probably be as simple as raising my dose slightly at the next pain clinic appointment. But, if tolerance is going to be an issue every few months, I know that I will eventually get to the point where dose increases aren't going to be as reasonable... and I am just wondering about other options and how this is managed. I would like to keep my leg muscles loose enough to walk (with a walker) and to avoid contractures, etc... so it is important to keep the spasticity to a minimum.
Thanks for reading this llllonnnggg post...