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Thread: Baclofen

  1. #1
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    Baclofen

    Evening
    What meds are we all on?, I have been on Baclofen for some time now, started at 20mg but im up to 70mg a day.


    Im not sure its working the best and im going to discuss with Neuro at next appointment, what other options are there?

  2. #2
    Forum Member Terry's Avatar
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    Hi Mcgraw,

    I have tried various levels and it doesn't make much difference with me. 70 mg is quite a lot,, I have tried 80 but I am quite a big chap and was very active then.

    I still take 20 mg of Baclofen but I really should try with out it. There is another drug that supposed to do a similar thing but I have not tried it.

    Perhaps try having less but reduce it slowly.

    Love Terry
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    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

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    I tried the other one, but it made me very fatigued and droozy. I might reduce slightly daily and see if it makes a difference. My Neuro said I can set my own dose up to 70mg a day
    Life is to short to match socks

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    Forum Member Ellie's Avatar
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    Hi John,

    How much spasticity do you have and where?

    I take 20mg Baclofen t.d. and a small dose of Tizanidine (is that the other one you tried?) at bedtime as my spasticity is worse at night and it makes me sleepy. I regulate my meds myself.

    I also had Botox in my legs a few years ago which relaxed tone.

    If you're on Riluzole, taking Baclofen at the same time of day may make you more fatigued, so stagger the meds.

    Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  5. #5
    Forum Member Terry's Avatar
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    I was told that I could have a 100 mg a day John;

    But if it does not appear to change much and you can live with the muscle tightness then it's best not to take them. They probably take a couple of weeks to get out of the system. I would reduce it slower, maybe one each of the first two days and then one every five days. I stopped taking my morning one today.

    To be honest, I have only kept taking them to keep the doctors quite. There are many different types of Mnd so Baclofen works for some and maybe not others.

    Keep us informed, Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

  6. #6
    Forum Member Ellie's Avatar
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    Quote Originally Posted by Terry View Post
    To be honest, I have only kept taking them to keep the doctors quite.
    It won't surprise anyone to hear that I don't do anything to keep the doctors quiet

    Baclofen can go up to 120mg/day. PLS tends to cause greater spasticity than ALS.

    Love Cheeky Chimp x.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

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    Its my legs that are the problem, esp behind my knees and around the hip area. After sitting it takes me a long time to stand straight due to it.

    Yes Tizanidine was the other one I was one, but only got to 30mg. I am not on Riluzole only the Baclofen and 15/500mg Co-Codomal for the pain I get due to the stiffness in my muscles.

    I need something because, I can deal with the tightness/stiffness but I need to keep mobile as much as possible and I think they do help, but don't think I would know unless I reduce dose and see if there is a difference. However I don't want to go back the way..../
    Life is to short to match socks

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    Quote Originally Posted by Ellie View Post
    Hi John,

    How much spasticity do you have and where?

    I also had Botox in my legs a few years ago which relaxed tone.
    .

    Ellie.
    Yes the Neuro has suggested Botox, did it make a big difference?
    Life is to short to match socks

  9. #9
    Forum Member Ellie's Avatar
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    John,

    30mg Tizanidine would send an elephant to sleep! The cocodamol won't help energy either (& will bung up your bowels too!)
    Have you a physio? Range of Movement exercises will help. I have regular hydrotherapy in a hospice, which is amazing for tight muscles. You're right, you have to keep the joints moving; a neuro physiotherapist can show you ROMs.

    I posted this on another thread a few days ago:-

    I had Botox in both legs to relax muscles. I had it done using EMG needles, to ensure injection was made into correct area of the muscle.

    I was concerned that muscles might be too relaxed and hinder standing transfers, so got a half dose of 75 parts. It relieved spasticity to some degree, I subsequently got the full dose. It lasts about 3 months and I found it painless.


    I type using eye gaze, so forgive my shortcuts!

    Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  10. #10
    Forum Member Terry's Avatar
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    Hi John;

    Have you done anything in changing you meds?

    I have reduced the Baclofen to one every night for a couple of weeks and don't think it's made much difference.

    Love Terry
    TB once said that "The forum is still the best source for friendship and information."

    It will only remain so if new people post and keep us updated on things that work or don't work and tips.

    Please post on old threads that are of use so that others see them and feel free to start new subjects and threads.

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