Baclofen question

[lisa1014]

I am having lots of issues with spacticity and my dr just keeps throwing more baclofen at it. I have gone from 30mg to 70mg in the past 3 weeks. I am still having issues.

My question is how much of this can they keep giving me? And is there a limit to it before they make you get a pump?
Also is there anything else for spacticity?

[Kimba22]

Hi Lisa1014,

Sorry to hear of your spasticity. Here's a link to the NMSS about oral Baclofen & dosing, which states the effective dose may be as high as 160 mg/ day (or more): http://www.nationalmssociety.org/abo...fen/index.aspx

More than one medication can also be used to treat spasticity. Zanaflex (Tizanidine) is used frequently together with Baclofen. Other meds are Valium and Dantrolene (this med isn't used a lot, because of potential side effects, namely, to the liver). http://www.nationalmssociety.org/abo...ity/index.aspx

The pump will probably be considered if combination therapy doesn't work or if you can't tolerate the side effects from them. I became a candidate for the pump after high doses of baclofen combined with what I could tolerate of Valium & Tizanidine wasn't effective enough.

Good luck to you!

[rdmc]

Hi Lisa,

I was on Zanaflex for many years and it did the trick...but one day it just quit working.

I then started Baclofen, and worked my way up to 80 mg (wow Kimba, I had no idea they prescribed up to 160 mg.)

On top of the fact that it made me drowsy, and hard to concentrate on work, the benefit from taking it just didn't happen. I could only lift one leg/foot a few inches off the ground, and my ROM in my hips and my gait were severly impaired.

So I became a pump person. This was a hard decision for me, but now I just wish I had done it sooner. I have had very good results, and through PT was able to relearn to walk more normally, with no noticeable gait impairment for a short distance anyway...my stamina for walking distances did not improve.

Not that the pump isn't without it's problems, nor does it work for everyone. Good news is you get to test drive the medicine during a trial.

Other things to consider when you are making a pump decision: it is surgery, and there are multiple incisions (somehow I've had 3 incisions with my pump surgeries, but it seems most folks only have two, one on their abdomen and one on their spine, a neurosurgeon does the surgery.

Then there's adjusting dosage so it's not too little (still have significant spasticity) and not too much (legs are too weak.) You sort of have to play "the Goldilocks game"...until you get the dosage "Juuuuust right" which means you have enough spasticity to compensate for weakness. . Even then it might still need tweaking, but mine has pretty much settled so I don't need tweaking in between refills. PT, post pump implant, is necessary, at least it was with me.

And there's always the risk of the catheter dislodging (been there done that) or pump malfunctioning and that means another surgery.

But with all those things, the pump is the best decision I've made during my MS journey.

Not that everybody will need a pump, but it is nice to know that when your spasticity reaches a level where you can't deal with it anymore, there are alternatives.

[bluegiraffe]

Hi Lisa,
I concur with Kimba22 and rdmc.

For me my spasticity was so severe and I developed leg contractures. The pain doctor (physiatrist) said the pump was the only option for me since I would require too high a dose of oral medication that wasn't even going to help me most likely.

I like rdmc; in hindsight wish I would have gotten it sooner to possibly eliminate the damage I incurred from the spasticity.

Everyone is different but it is a good option to look into if you need it and are a candidate.

Hope this helps some.

[lisa1014]

I called again today and the nurse now says she thinks I need to be seen! Duh I wanted to be seen a week ago!! But guess what the Dr is out of the country and no one can see me so I have to wait until next Wed to see him!

So that means another week of feeling like I can't function!

In the words of my friend Kent MS Sucks!!! and I am living proof right now!

[hunterd]

one of the side effects of oral baclofen is tiredness. I like the Others have a baclofen pump. when I was taking oral baclofen, my doctor had me up to 80 mg per day and I was so tired I could not function. After I got the pump I could not be leave how much better I felt! It took some tweaking in the beginning to get the right dosage, but after that it was ok.

[lisa1014]

Do those of you with the pump have any issues with moving or doing physical things? I work in a daycare where I am on the floor and lifting kids.

Is it all inside or is there something on the outside of your body?

Sorry I am just trying to get all the info I can before my appt next Wed

[grace4et]

would pregnancy be a problem with the pump?

[rdmc]

Do those of you with the pump have any issues with moving or doing physical things? I work in a daycare where I am on the floor and lifting kids.

Is it all inside or is there something on the outside of your body?

Sorry I am just trying to get all the info I can before my appt next Wed

Everything is "on the inside." The pump itself is in your abdomen, mine is on the left side, closer to my hip than to my belly button, just below my waist.

The catheter is all "inside"....it goes from the pump into the thecal sac of your spinal cord.

As far as moving around, at first, I imagine, you'd be aware of it, due to incisions, etc. But over time, I've pretty much forgotten mine is there. My neurosurgeon had me wear an abdominal support brace (sort of like a soft elastic back brace, with velcro closure) to keep the pump in place while the incision healed, and to stabilize it.

There are two sizes of the pump, a regular size (I have this kind, and it's about the size of a hockey puck) and a pediatric size...smaller and needs to be refilled more often, but when one has a small frame, it works better. My neurosurgeon gave my PT some restrictions as to how far I was allowed to stretch, when I was doing the PT. However, I've seen others say they had no restrictions after their pump surgery.

You can go to the Medtronics website and they have lots of info about the pump.

[Don2480]

I had to taper down on the large dose of Baclofen. For some reason it made me disconnect from my peeps. Meaning I was not very engaged in interactions....Something to watch out for if it was not for my wife I would have been clueless...

[lisa1014]

So I am now on the search for a beginning yoga class. He told me he wants me in a class 3 times a week. That I am on plenty of meds (which I agree) so I am in the search for a class.

[BobOP]

Hi Lisa

Like the others, I also have a baclofen pump. I have had a pump since 1999. No the same pump...LOL

Before I got the pump, my dr had me at 120 mg of oral baclofen

I have found the pump & catheter to be very durable. I still have the same catheter since 1999. I am on my 3rd baclofen pump.

I have been doing therapeutic horseback riding for 9 years. It has been very good for my balance & core muscles. Over the years, I have had a few early dismounts. I have been as active as I have wanted to be with the pump.

For more info, you can go to Medtronic.com...if you want to access the info quickly, Medtronic opened a new website earlier this year-baclofenpump.com

Take Care,
Bob

[Kimba22]

would pregnancy be a problem with the pump?

Good question! From what I could find, pregnancy with baclofen pumps are rare (but has happened). Here's an article for you: http://www.ncbi.nlm.nih.gov/pubmed/18562512

I have the larger, 40 cc size pump implanted (although all my docs say I should've been given the smaller, 20 cc size pump ). In my case, I think it would have been very uncomfortable to go full term (I also had big babies) if I had my current pump back then. Having the pump pushed toward the skin late in pregnancy (especially when it is stretched thin) would, IMO, also be something to avoid. Maybe that's why the child in the above article was delivered by c-section at 36 weeks.

Would be a question better answered by a doctor, though. If you ever find out, let us know, OK?

Best wishes,