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SSesser

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After four years, my PLS (newly diagnosed six months ago) is producing leg stiffness that makes walking more difficult and running impossible. No spasticity, just stiffness. My doctor prescribed Baclofen, and I started by taking half a pill (5 mg) before I went to sleep and a quarter a pill (2.5 mg) when I woke up. About two hours later, I experienced fatigue, drowsiness, nausea (a new sensation for me, because I'm almost never nauseous) and, for ten frightening minutes, labored breathing. My doctor raised the possibility of a Baclofen implant device, but it sounds scary. Does Baclofen work so well on stiffness that I should consider an implant? Or are there other drugs that might prove effective for stiffness? Thanks, Stan.
 

billbell52

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There is another drug called Tizanidine. When I initially took baclofen it made my legs feel rubbery and I actually had a harder time walking. Both drugs cause drowsiness. You will build up a tolerance to baclofen. My neuro talked about the pump but my walking declined fairly quickly so being in a PWC diminished my interest in the pump. Some people swear by the pump and some have it removed after a few years. They can do a test to see if it will work. I take baclofen and tizanidine at night for leg cramping.
 

ShiftKicker

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I'm actually reducing my Baclofen dose (80mg/d) due to the nausea and breathing issues at night in particular. I realized, as I reduce my dose slowly, that it had also actually increased my night time spasticity- which is way less now I'm down to 60mg a day. I'm opting for Tizanidine exclusively after I reduce my Baclofen further.
However, I know it improves others' spasticity SIGNIFICANTLY, so don't reject it till you've given it a really good try.
The implant device can actually be a better option for those who respond poorly to oral baclofen. Because it's delivered directly to where it's needed, the dose can be much lower, plus some of the issues (nausea, poor cognition) are not as prevalent. If your doctor recommends, you can definitely trial, as the above poster stated. They actually won't implant a pump unless you respond well to their test first.
Good luck
 

RooRoo

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It took me a year to build up a tolerance to Baclofen. I have a problem with medications. I started with 1/4 pill, titrated to a half pill and about 4 months ago to a full pill at night only. I wondered if it was doing any good. We went out of town last weekend and I forgot my pills (dumb, I know!) but I found out just how much it helps my spasticity! I don't want to go with the pump cause I already have the peg tube. How many devices can one body take? Nonetheless, I had so many problems with peg tube surgery, not doing surgery again.
 

Tractor Boy

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Stan, from what I understand, stiffness is a result of spasticity. I have it quite severely, so I take Baclofen. Night time cramps were still a problem so they added tinZANidine. No cramps now.

I've never tried tinZANidine alone, but it may be worth a try for you.

I've heard good things about the Baclofen pump. However, I Googled "Baclofen pump." The pictures and shear size of that thing totally freaked me out! They are a disk approx 3.5 inches in diameter an nearly an inch thick. Just couldn't see having that thing implanted under my skin.

Hope this helps. TB
 

AKmom

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I have been on Baclofen since 2010. At first, the doc had me on 60mg a day, which was way too much. I then took 10 mg only at night for a while, along with the tizanadine at night to control the 'lock up' cramps I would get. Here we are, 5 years later, I no longer get tired from the Baclofen, nor do I get nauseated anymore (try eating a few saltine crackers when you take it with some water). I now take 20mg 3 times a day (sometimes only twice a day), along with 8mg of tizanadine at night. I am now starting to feel the stiffness or spasticity even at this dose. However, I am in a pwc for most of the day now. If I would be up and try to walk more, I would most likely see if I would be a good canidate for the pump. Since you are just starting out with Baclofen, you might consider trying it a longer to adjust to it before jumping into the pump.
 

SSesser

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Has anyone had success reducing leg stiffness stemming from PLS by methods not involving drugs? Aerobic machines like Stairmaster? Acupuncture? Yoga? Tai chi? Homeopathic remedies? I'm no fan of drugs and would love to find alternatives.
 

Tractor Boy

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Stan, I would start with a qualified Physical Therapist who specializes in ALS/PLS symptoms. They can develop unique exercise and stretching regimen WITH you. TB
 
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