What has been your highest oral baclofen dose?

[22cyclist]

I have just had my Baclofen dose upped again to 40 mg three times per day, making it 120 total per day. I have splints for both my hands and legs/feet to wear at night. When did your docs switch you to a pump, if they did at all.

Thanks for reading.

lisa

[knuckle]

Google this: glycine spasticity multiple sclerosis

Glycine, an amino acid, is an "inhibitory neurotransmitter" and works along the same lines as Baclofen.

I take 1000mg Glycine along with Baclofen (20mg every 6 hours) and find it very helpful, especially at night. There's even some research that it may slow MS progression.

Glycine is very cheap, safe and available at most supplement shops/online.

Another supplement is GABA (gamma-aminobutyric acid), also an inhibitory neurotransmitter, and Baclofen is just a stronger, faster acting form of GABA. I've taken GABA at night and slept straight through with no spasticity.

Neuros tend to not know about these supplements and will just keep increasing your Baclofen, with it's accompanying side-effects, until you start thinking about implanting one of those pumps. I think it's worth experimenting a little with Glycine and GABA, especially at night.

Lastly, I've found elevating my upper body when sleeping at night with a wedge reduces spasticity from spinal lesions. I'd like to get one of the motorized beds some day.

[22cyclist]

Thanks I will check into these for sure.

[rdmc]

Highest baclofen dosage my neuro would okay was 80 mg...but when I took that high a dosage, I was dead to the world most of the day (I had used Zanaflex for years with great success, but one day it just quit working.) I started baclofen at a low dose and titrated up. At 80 mg there was no way I could do my work and take that dosage, I did tolerate it for awhile, but 60 seemed to be the max that I could take and still perform my responsibilities.

The thing was, whether the dosage was high or low, I got no real relief from the spasticity. My hips were affected, and my legs were begining to scissor. Even with the baclofen my legs were still pretty much immobile, couldn't lift my leg more than an inch or two off the ground, couldn't bend my knee to do a stretch, PT said I had no range of motion to speak of, and my gait was awful.

From my understanding what they're looking for when they recommend the pump is not necessarily what dosage of oral you're on, but what is the oral med doing for you. Are you able to tolerate the side effects, and is it helping to relieve spasticity?

Once you've taken the test, you know whether it will help you or not...for many of us the difference after the injection of baclofen is so stark that you can hardly believe it. I always used the word "miraculous" to describe the difference before and after.

Here's an abstract to an article that used to be online, but now I could only find the abstract (I'm sure you or your husband could get access to it.) It's called Too Little Too Late and brings up the point that neuro's may be waiting too late to Rx the pump. I was still mobile, when I got mine, but the mobile before and the mobile afterward was significantly different, especially after PT and learning to walk normally again.

http://msj.sagepub.com/content/17/5/623

However, it's not a fix all. It did relieve my spasticity, but I still have only a limited distance I can walk, it did nothing for my stamina. And you do have to live with a certain degree of spasticity, because for many of us our legs are weak and the spasticity is what allows you to stand and walk, or transfer if you're in a wheelchair.

Also the catheter for me was placed at T9, so if you deal with upper body spasticity, it won't help that, mostly helps for problems below the level of the catheter, although I did have some relief of spasticity in one shoulder and claw hand (my physiatrist says it's because it loosened up muscles in my back that were probably affecting the arm.) I still take oral baclofen for facial/neck spasticity.

It's not a procedure without risks. I think sometimes we "pump people" give the impression that it's the answer for everyone but that's not true. Someone on the board just recently reported they had to have theirs out due to pain from the pump itself where it was embedded.

I've had my share of complications, 6 months into it I woke up one morning with a swollen belly, the catheter had come out of my spine and migrated to my abdomen and was pumping baclofen there. No alarms went off because technically the pump didn't "know" there was a problem, it was pumping like it should be...just in the wrong place After surgery (and the surgery involves an abdominal incision and incision along your spine, and I have gotten one in my side too, although most people don't) I developed a MRSA infection at the incision site and almost had to have it out because of the infection, but thankfully it did resolve but caused me to be in the hospital extra time, and then use IV antibiotics at home for 5 weeks. But I've read other accounts of people that have to have it out when infection hits.

With catheter problems there's always the risk of baclofen withdrawal which can be life threatening, as can baclofen overdose (this could happen if there was a mistake in programming the machine.)

My pump has broken loose from the pocket, so it's considered a "floating pump", which really doesn't affect the operation of it, but I do wear a binder about 24/7 to keep it from moving around because sometimes it will get caught on my hip. I'm willing to put up with it because the alternative is another surgery to reattach or reimplant it.

A pump also involves frequent visits to whomever manages the pump (for me it is a physiatrist) to get the dose right, or to tweek the dose, and for refills...so you have to be prepared for that.

So there are many pros to the pump, but the cons are there too. For me the decision would be based on "if" the oral dose side effects were manageable and "if" the oral dose was relieving my spasticity. There are no side effects (at least for me) from the intrathecal delivery of baclofen...my dosage is 140 mcg, versus the 80 mgs I was on before.

Only other advice is if you're going to have it done, find a good neurosurgeon who's done lots of procedures. I've read horror stories about people who's neurosurgeon wasn't well versed on the surgery. Even with one of the "best" neurosurgeons in town, who had lots of experience, I had a catheter problem...but when I asked him how it could happen the way it did, he said he'd never seen a catheter do that before, so that goes to show there are always things that can go wrong.

Bottom line though is for most of us the pump is a great assett and relief.

Sorry for the length of the post...just wanted to paint the whole picture.

[22cyclist]

RDMC: Thank you so much for that detailed answer. I will track down the article. You made a lot of good points. I already see a psyiatrist that manages my spasticity so I am familiar with that type of setup.

It was good to hear your perspective on the pump.

Thanks
Lisa

[hunterd]

I will answer exactly the same as rdmc, 80 milligrams a day was the highest my doctor would go also.

[SmartyPants196]

Highest baclofen dose

I have just had my Baclofen dose upped again to 40 mg three times per day, making it 120 total per day. I have splints for both my hands and legs/feet to wear at night. When did your docs switch you to a pump, if they did at all.

Thanks for reading.

lisa

My highest baclofen does is 20 mg four times a day, my neurologist said that i was at a high dose and instead of upping the baclofen he upped my neurotin for spasms, that i take 300 mg x three = 900 a day times a day and at night i add another one, as i was having terrible leg crushing pain at night. Which did seem to help. It seemed When i started a two times a day exercise the pain at night gets worse as i
would wake up in the middle of the night and it felt like a ton of rocks were on top of my legs. Another thing my primary prescribed was ambien 5mg which made me stay asleep through the night so i wasn't feeling that crushing feeling. To be able to get a good night's sleep without waking up in the middle of the night being awoken by the pain, with getting more sleep and staying asleep is a wonderful change. Now i sleep through those leg pains and i wish i would have been given the sleeper pill years ago, as i would wake up in exasperating pain.