I take 3 Baclofen a day and have since October, but I have had absolutely no relief from my leg spasticity at all. In fact, a new symptom that developed over the past week and a half is the "MS hug".... so spasticity around my midsection. If anything, the spasticity in my legs has gotten much worse since starting the Baclofen. I can't get out of bed without my legs straightening and going into a horrible cramp.

What can they do next? An intrathecal pump? Will that even help since orally it hasn't helped one bit? I'm trying to get in with my neuro to talk about this and switching DMDs, but I'm in Canada and apparently getting in with them on demand isn't always possible.

Baclofen didn't help me much either, but I remember that you have to wait
until you rev up to the optimal dose. How much are you taking? I didn't like it,
because when I got up to the right dose, I felt like I was stoned.

I tried baclofen but not only did it not do much for me it made me irritable, grumpy, and hungover the next day.

Have you tried other muscle relaxants? I have had good luck with lorazepam (Ativan). It doesn't effect me the way Valium did or baclofen. It doesn't knock me out for days or leaving me feeling hungover. I get rectal spasms due to MS in addition to leg spasms and the hug. It works great on the rectal spasms and is the only medication that I have tried that works for them. It also helps my hug so much. It does help my leg spasms but not as effectively as Valium. Of course, Valium knocks me out and I could sleep through anything and for days straight.

Talk to the neuro and see if there is something else you can try. Keep in mind that I think baclofen is one of those meds that you have to taper down off of. I don't think it's one that you can just stop taking.

I'm taking the full dose which is 10mg 3x/day. Have been for a while. I feel fine on it (not hungover or stoned, I'm tired though).

Ativan is not something I could take regularly as I get weird on it and do feel hungover the next day. I take it before MRIs but for my next ones I will probably skip it since I hate the feeling so much. Valium would knock me right out I'm sure... Would rather the spasticity than that haha.

Thank you, Tktik for mentioning having to slowly wean off the Baclofen. I do know this but for anyone else reading that is important to note.

No one knows much about the Baclofen pump? I'm sure I read somewhere about it being an alternative for those who didn't find relief from oral Baclofen.

This is going to take a bit to write because I’m slow and need to use a WORD document for it to make sense, but I want to share my experiences with Baclofen and the pump.

Baclofen works for most of the spasticity that I get, but not too well for the HUG. I’ve had a couple of rounds with TM, so maybe that makes a difference. Around 40 mg. is my usual daily dose, but I’ve doubled that when things are nasty; especially with night spasms. My doc says that dose isn’t an issue if it is increased over time because the body can develop a tolerance to it. I try to take drug holidays as much as possible, where I decrease the dose and just cope with the symptoms for a couple of weeks so that lower doses will work again.

Maybe your body has become tolerant to the current dose of 30 mg and it might be worth checking with your doc about increasing it. I’m also from Canada so know what you are talking about with respect to access to medical care. That limited access might be an issue if you decide to get a pump. It was one of the reasons that I chose not to get it as the closest hospital that has the equipment and the docs who know how to program the pump are a 90 minute drive away from where I live. If something were to go wrong with the pump, that 2 hours or so to get care is too risky and could prove fatal if care is delayed.

I’ve had a few spinal infusions of Baclofen because when I was tested for the pump, it did work to relieve the spasticity. Spinal infusions are not standard forms of treatment but because I’m allergic to many drugs, including the opiates, that method is a last resort to get things under control when nothing else works and the body is going into shock. This body of mine has other issues that complicate dealing with the MS.

I decided against getting the pump even though the spinal infusions worked for a few reasons. Because of its size and my small body, I’m an iffy candidate, as it might get in the way of digestive function, which is also an issue for me. The pump is installed under the skin of the belly and there isn’t much of one on me so it would take up the better part of the area between the navel and the pubic bone. Pressure in that area can set off the digestive issue that I’ve also been blessed with and having a pump that is 3 inches in diameter and 2 inches thick sitting there would probably do that.

Since being tested for the pump, I’ve also found out that I’m electro-magnetically sensitive, so having a wireless device, like the Baclofen pump, inside my body could make symptoms worse. Exposure to things like cell phones, wireless computers and the myriad of wireless technologies in stores, hospitals and the like all make my symptoms worse, so I avoid being exposed to them. I have an electro-magnetic shielding blanket for when I need to be in hospital to keep exposure to a minimum.

Having said all that, it might be worth checking into getting a pump in your situation. Testing and installation involves a couple of days in hospital. First an infusion is done to see if it is effective and if it is, then the pump and line into the spinal canal is installed. The correct dose is calculated and programed into the pump. Once you are past the observation period and everything is stable, you will need to go back in every month or so to get the drug reloaded into the pump and to have the pump reprogrammed.

Hope that this helps.
With love, Erika

Hi MSbelle,

You can ask your Neurologist about increasing your Baclofen. At 10mg 3x a day, that is a starting dosage, you can go higher. If you are not happy with Baclofen there are other options. The link below lists the medications which can be tried in the treatment of Spasticity.

http://www.mstrust.org.uk/atoz/drugs.jsp#spasticity

I'm on 20mg 4x a day. Most of the time it helps but there are times when severe pain pays me a visit without notice and I have to up it to 40mg for that particular time combined with other meds and the spasticity calms down. I don't know what stage you are or what level your pain is but its always a good idea to discuss this with your neuro. That's how I can take my meds the way I do.

I agree with all above--I was told that I could go to 80mg/day and even higher if I really needed to. I'm on 60mg/day now, and add 10mg in between when needed,

i was on zanaflex before...it was great, but knocked me out. So I went to baclofen, which is milder but I'm not sleeping all day on it.

I forgot to add too that your body gets used to the meds and then at that dose it stops being effective so the dosage may have to be adjusted. At 10mg after awhile you'll notice you stop being so sleepy but your spasticity is worse, so doc may adjust your meds and they work again but your sleepy again. Cycle continues.

I took baclofen for about a year until I had a bad reaction to my copaxone injections which sent me running crying to the doctor. I thought the baclofen was working, I certainly wasn't going to complain. Sure I woke up to many a Charlie horse, and yeah I got spasms so bad at times you could actually see the muscles twisting and jumping under the skin like a pair of feisty puppies under a blanket. But it was helping...

Thankfully I did have such a horrible reaction to the copaxone since then I got to learn what 'relaxed' muscles were probably for the first time in my life. They switched me to gabapentin which is a generic for neurotin and skelaxin (muscle relaxant). I started noticing relief just starting the gabapentin, but once I weaned off the baclofen and started the skelaxin... Whole new body for me! Though I still take a zanaflex at bedtime.

As far as pain pumps are concerned, I've known a small number of people who have had them 2 thought greatest thing since sliced bread! 2 said worst mistake they ever made never worked properly and they couldn't wait for the doctors to rip them out. And a handful of people who could have used them in terms of cutting back on oral medication but weren't good candidates because sensitivities.

Everybody and every body is different. And I don't know how many different meds you've tried before the baclofen. For me I took flexeril for about 2-3 years never feeling it was doing anything for me, but swallow the pill anyways... Switched to robaxin for another couple of years, thought it helped but still had major spasms that would lift me out of bed/chairs or send me crashing to the floor... Went on zanaflex, eh it was something... Did the baclofen for a year and again thought it was working... Neurotin and skelaxin ended up being my golden combination.

I'm completely narcotic free now, still have the odd day of spasisty (rainy days, extremely hot/humid days) but even my worst day now can't compare to my best day on baclofen and lortab. And I do still take a zanaflex at bedtime, so I sleep fitfully 90% of the time. And if I could avoid having myself cut open for a few months I might even be able to finish physical therapy and get a job at long last.

So it's really a matter of what you want to do. You can see if you're a good candidate for the pain pump and hopefully it works like a charm for you, or you can keep bouncing to the doctor trying this med and that med and varied combinations. There's really no way to say which is 'right' or 'better' for you. I realize that doesn't seem very helpful... So I guess the short answer is, my fingers are crossed for you, from one who has definitely been there, to the point of torn ligaments and tendons from the spasms, may you find something that helps!