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niceboots Scope Member Posts: 198 Pioneering
hi, I'm 26 and have diplegia.
My DR has prescribed me baclofen to help with the increased tightness I have been experiencing recently.
It's not a drug I have ever come across before and was just wondering what sort of experiences people have had with it.


  • barneypup
    barneypup Community member Posts: 17 Listener
    Hi chris, I know lots of people have no side effects with bs Loren but my daughter suffered hallucinations which is listed as a known side effect.. I hope it works for you..
  • Hymerkar
    Hymerkar Community member Posts: 63 Courageous
    Hi Nice Boots, I am on Baclofen. I have been taking them on and off for around 5 years now.

    My GP prescribed 10mg tablets 3 times daily but I find that if I take 3 I loose muscle tone which makes it hard to stand and almost impossible to walk. I usually take one in the mornings which just relaxes me enough for me to be able to get up and showered and get moving. But recently I have had a trapped nerve in my lower back and my left leg has been really tight. So much so that I couldnt stand the pain and had to take pain killers, which is not me at all. I then took the Baclofen 3 times daily and it has helped to release the trapped nerve but as I said, it makes my muscles so weak I cannot walk. At the moment I am on 2 daily which is relaxing my tightness but allowing me to walk a little. I am on a battle to gain my mobility and trying to build my muscles up again after being off my feet for over 6 months. I tried taking just one, but I was really stiff again. Its very swings and roundabouts for me.

    I know that there are other adults with CP on here who cant take them at all and others who say they dont make any difference.

    I hope this helps.

    Take care

    ps. I am still waiting for my appt for a cast for AFO's!!!!!!!!!!
  • niceboots
    niceboots Scope Member Posts: 198 Pioneering
    Hi, karen, I have started taking the lower dose, half a tablet three times a day, and find it really makes a difference!!
    I find it just takes the edge off the tightness to be comfortable, without making me so loose than my limbs feel like jelly.
    I have found the most benefits at night, for the first time in years - since I was on diazepam after an operation, I actually relax properly!!
    I also find I can get a much better stretch, and my night splints feel alot more comfortable.
    I must admit I put off taking it after reading all the side effects, and other people's experiences. And that it says avoid alcohol - I work in a pub, so that is the only downside I can fnd.....

    I can't believe you are still waiting to be casted!!! let's hope it's worth the wait....
  • rcwallace22
    rcwallace22 Community member Posts: 19 Listener
    I take baclofen three times a day and it helps with my movement etc. I take diazepam for acute muscle spasms usually post operatively. But baclofen helps me keep on top of things. if you are having side effects increase it slowly.

  • andrewday
    andrewday Community member Posts: 4 Listener
    You have to take a lot of oral baclofen for it to work properly and the high levels I was on just spaced me out and a few years ago my pain consultant sugested we tried ITB http://www.medtronic.com/patients/severe-spasticity/therapy/index.htm and 10 years on I have never looked back.

    Speak to you pain consultant not your GP and ask if this is right for you

  • AlexW_Scope
    AlexW_Scope Scope Posts: 225 Pioneering
    edited July 2014
    There is more on info on baclofen at http://www.scope.org.uk/itb

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