Baclofen side effects

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popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 12/27/2008 12:11 AM (GMT -6)   
Has anyone found a cure for the weakness that baclofen causes? I have baclofen in a pump and it is wonderful cos it has greatly improved the spasticity & stopped the incessant pain BUT it has made my walking much worse & more shaky. So I am just wondering if anyone has found something that helps? Happy New Year smilewinkgrin
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995.
Row, row, row your boat gently down the stream
Merrily , merrily, merrily, life is but a dream


Gretchen1
Forum Moderator


Date Joined Jan 2007
Total Posts : 3521
   Posted 12/27/2008 9:14 AM (GMT -6)   

Hey Popsie,

We all need a certain amount of spasticity in order to walk.  If you are finding that you cannot walk, then please talk to your doctor.  You maybe able to reduce the amount of baclofen you take in order to increase the spasticity.  Of course you may experience more pain then.  Good luck; you are in a bit of a catch 22 but you should be able to find a comfortable middle ground.


Gretchen       co-moderator MS board       diagnosed with MS July 2006
 
I have no lesions on my soul and so I will live with no limits.


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 12/28/2008 2:57 AM (GMT -6)   
Hi Gretchen,

Yes, I know that it is a complicated balancing act & have been experimenting with dosage. I do not take a high dose but do have a low tolerance to all drugs. I have to keep the spasticity down if I want be able to sit down and in fact I walk better too when leg is more flexible but if I increase dose to achieve this I shake even more. I have found that building the strength in the leg with exercise has improved the shakiness 15% but I was looking for any non medical ideas that anyone might have found helpful. Have not found physios are much help.
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995.
Row, row, row your boat gently down the stream
Merrily , merrily, merrily, life is but a dream


bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 12/30/2008 1:06 PM (GMT -6)   
Popsie,
My doctor just put me on baclofen as of yesterday. He told me to start out with 1 per day (I think he said they would be 10 mgs. but not sure). I am supposed to work my way up to 30 mgs. (3 pills a day) and then call him in 2 weeks and let him know how I am doing. I have not picked up my prescription yet because I saw him yesterday afternoon and it was late in the day so I don't think his nurtse got it called into my pharamacy in time. It is good to know that others like me are also taking this drug. I will try and keep you updated on my progression of baclofen once I start on them. Right now, my left leg has really been bothering me but I sure don't need to start falling down when I try to walk either. Anyway, good luck to you. May you try to have a Very Happy New year!
Chuck Huckaba
AMWTP Training Instructor
Idaho Falls, Idaho


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 12/30/2008 5:06 PM (GMT -6)   
Bohuck2,

Hi there, I see you are some sort of training instructor so maybe you would be just the person to show us what exercises can help. Up till 2 years ago I was doing exercises at home everyday. Then a medico said stop doing the exercises they are causing the spasms. So I stopped for 2 weeks to see. Then when I tried to restart I could not & from then I went into a downward spiral the less movemnt I did the more spastic I became the more pain I had & the less I could move. So whatever you do keep doing it cos with MS if you stop it is difficult (near impossible) to get it back. There is a dr with MS who wrote a book called Living with MS (he also has a website of this name) by G Jelenyck. He looked at everything available (medical & alternate) & devised a programme including exercise & diet. I believe he has kept well & active. Baclofen (in the pump-is good for people who have bad reaction to pills cos it is fed direct to spine where it is needed) has given me my life back - I could not take the pills. Now not only do I have no pain but I have less spasticity so can exercise on Wii Fit, stepper& cross trainer but I am always looking for new more specific exercises ( my left leg is the problem too) Currently I am trying to find ways to get the thigh to contract as I would like to climb stairs (my house has five half levels, lots of stairs-pretty view at the top!). Happy New Year smilewinkgrin
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995.
Row, row, row your boat gently down the stream
Merrily , merrily, merrily, life is but a dream


bohuck2
Regular Member


Date Joined Dec 2008
Total Posts : 196
   Posted 12/30/2008 6:23 PM (GMT -6)   
Popsie,
Unfortunately I am not that kind of Training Instructor, I teach safety courses to the Operators here at the AMWTP.
I appreciate the information about baclofen as it will be a new experience for me. I am experiencing many symptoms but have learned to deal with them. I try to keep my head up and go with the flow. I appreciate the fact that I am the one having to deal with this monster and not one of my kids, thank the Lord! Well, better get going and do something, even if it's the wrong thing to do smilewinkgrin . Take care and Happy New Year to you also!


 
 
 
 
                                           Chuck Huckaba
                                    AMWTP Training Instructor
                                          Idaho Falls, Idaho
                                  Diagnosed with PPMS May, 2007
                                   but still working at the present.         
                Tried just about everything there is for MS, including Tysabri
                               Waiting to start Cytoxin Treatments soon.


popsie
Regular Member


Date Joined Aug 2008
Total Posts : 271
   Posted 12/30/2008 7:40 PM (GMT -6)   
Bochuck,

Oops, sorry, thought I might have guessed wrong. I have read that if you want to protect your kids the best thing is if they take a fish oil capsule everyday (you get some that have no after taste apparently the nervous system is made out of fat so you want to put the right fat into it & this helps to build a strong nervous system - its good for heaps else as well. Have a happy 2009 smilewinkgrin
Have had relapsing/remitting MS since 10 yrs old. Secondary/progressive since 1995.
Row, row, row your boat gently down the stream
Merrily , merrily, merrily, life is but a dream

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