Baclofen- to take or not

underthestars
underthestars Online Community Member Posts: 3 Listener
edited October 2021 in Cerebral Palsy Network
I’ve recently seen a Doctor and he would like to prescribe me Baclofen, I’d never heard of it before last week. Does anyone have any experience of taking it. Good and bad.

I don’t have spasms but my legs are tight and heavy. Which is in turn painful.

Comments

  • underthestars
    underthestars Online Community Member Posts: 3 Listener
    Hi ? 

    I’m Hannah, 30 and I live with my husband and cat. I’m here because I have Cerebral Palsy and over the past few years I’ve noticed things are changing and getting challenging. 
  • Ami2301
    Ami2301 Online Community Member Posts: 7,877 Championing
    Hi @underthestars and a warm welcome to the community! How has your weekend been? :)
  • chiarieds
    chiarieds Online Community Member Posts: 16,834 Championing
    Hi @underthestars - & welcome to the community. I imagine, as with many disorders & meds that may be prescribed, it can be a bit of 'trial & error' to find what may work for you. Here's some info for patients about Baclofen, where you'll see it's a muscle relaxant that can help with CP: https://www.medicines.org.uk/emc/files/pil.2594.pdf
    I will ask @Richard_Scope Scope's Specialist Information Officer as regards CP if he would advise.
  • Richard_Scope
    Richard_Scope Posts: 3,749 Cerebral Palsy Network
    Hi @underthestars
    Baclofen is very commonly used for muscle spasms and tightness in people with cerebral palsy (CP). It is a muscle relaxant. It is taken orally but can be delivered in higher and more consistent doses via a pump.
    As with all medications, there can be other effects. It is important to work with your G.P. to find the right dose for you.
  • Reg
    Reg Online Community Member Posts: 109 Empowering
    Hello @underthestars

    I took baclofen for many years . If you do decide to take it the main thing is to increase the prescription slowly until you and your GP are happy that you have the right dose for you with the maximum benefits.

    I found that baclofen made me very tired but I could certainly walk better on it with less tightness and more flexibility. 

    If you decide to give it a go then good luck 

    If you are not having neuro physio you may want to ask your GP for a referral so you get the maximum benefit out of the baclofen 

    good luck with it 
  • JustPete
    JustPete Community Volunteer Adviser, Scope Member Posts: 303 Empowering
    @underthestars I agree with everything that you have been advised above by my colleagues.  I hope Baclofen works for you if you decide to take it.

    I wish to outline an alternative experience of Baclofen & GPs.

    Baclofen is a very common drug prescribed by GPs for symptoms you have outlined. But it is not the only drug.  GPs are General Practitioners - they know 'stuff' about a hell of a lot medical conditions, but will not know in depth 'stuff' about each condition.  For some GPs, Baclofen is likely to be the only 'go-to' drug for somebody with CP.

    If you find Baclofen does not work, or the side-effects are not bearable, you could ask for a referral to a Neurologist.  There are so many new drugs available, and I have benefitted from these when Baclofen just 'did not do the trick'.  I now take 4 different drugs, none would be listed as 'CP Drugs' but through trial and error they work terrifically.

    As I said above, I hope Baclofen works for you.  You may need patience.  But don't be downhearted if it does not work immediately.  Don't be worried to ask for other medical opinion either!!!!

    GOOD LUCK :smiley:
  • Stayce
    Stayce Online Community Member, CP Network Posts: 839 Empowering
    edited November 2021
    Hi @underthestars
    If it’s helpful in your decision to take Baclofen or not

    I totally agree with @JustPete

     Baclofen is frequently GP’s drug of choice for CP and can be routinely prescribed

    It can work great for some. It did not work for me at all.

     Like @JustPete I take another drug. 

    There are other drugs out there, but GPs don’t always look at these. It might be a good idea to see if you could be referred to a neurologist so that you could have a more thorough consultation as to whether Baclofen would be best for you, and/or if you decide it isn’t for you what other options are available to you

    Hope this helps

    Best of luck
  • chiarieds
    chiarieds Online Community Member Posts: 16,834 Championing
    I don't know if this is a consideration here @Stayce - but I have found that GPs (perhaps understandably) prescribe, not only to the best of their understanding, but also the cheapest med. I don't have CP, but have a genetic disorder associated with neurological problems. In my own case,  the first, cheapest med (as I later found out), didn't work for my neurological problems; the more expensive alternative does help dampen my pain, & with fewer side-effects (!), as it has a similar effect on pain, but with a lower dosage.
    So, I agree with @JustPete & @Stayce - there are other meds out there; your GP might know, or a specialist's opinion might be needed. Also hope this helps @underthestars
  • Stayce
    Stayce Online Community Member, CP Network Posts: 839 Empowering
    I think you’re right @chiarieds, I think that does play a part too. 

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