Forum

Baclofen

Hi everyone

I wonder if you can help?

It’s 11 months since I was diagnosed with PPMS and it’s been a learning curve. This January I found that I was getting really stiff and my back just ached all the time and when I contacted the MS nurse she said it was MS Spasticity and recommended Baclofen. She sent me a letter (GP as well) and for me to go to the GP and get a prescription. Well I googled Baclofen and got a bit scared and just didn’t go to the GP instead I upped the intake of paracetamol and ibuprofen and thought it will get better when the temperature warms up.

I was in clinic last Thursday and I was as stiff as a board, the MS nurse was a bit annoyed that I hadn’t taken her recommendation for the Baclofen.

I was always so healthy I never got ill not even a head ache so never took medication on a regular basis, even taking the paracetamol and ibuprofen regularly is alien to me.

I am going to try the Baclofen. What I want to know is, what affect will it have on me? The MS nurse said I could try a very low dose to start (she mentioned 5mg to start) and then up it if need be and I’d be taking it 3 times a day.

  1. I was afraid that it would impair my ability to drive, that I wouldn’t be safe.

  2. Would it send me to sleep at odd times of the day, would I be more prone to falling over.

  3. Would I have to give up on alcohol, not that I drink that much but I do like the occasional glass of wine (maybe 2) and a half of larger now and then and when I go on holiday.

Can people tell me what they thought of taking the Baclofen and if they felt it worked for them and what to expect. I know everyone is different and things sometimes don’t work.

Thank you Linda

Hello Linda

Baclofen is a very common drug prescribed for stiffness (aka spasticity) and spasms. You’ve probably found that your over the counter painkillers just don’t help with either stiffness or neuropathic pain. That’s normal.

The thing about stiffness is that your muscles need a bit of it in order to stand up and walk, or in fact to work at all. But too much stiffness is painful and leads you to walk in ways that will do you damage.

Many of us take Baclofen and have done for some years without necessarily needing to increase the dose. It’s usual to start a drug at a low level and gradually increase it until you reach a level that aids the stiffness and/or spasms but without making you too weak.

It’s also usual to take drugs throughout the day to maintain a sensible amount of the drug in your system.

Starting on a dose of 5mg at a time won’t make you dopey, nor will it mean you can’t drive. Increasing the dose won’t change that. Nor will you be unable to drink alcohol.

I take about 60 mg per day in divided doses. I don’t fall asleep all the time and would be perfectly safe to drive (I no longer drive but that’s for different reasons). I also drink a couple of glasses of wine and/or gin fairly responsibly.

If you find you dislike Baclofen, there are other drugs to help with spasms and stiffness, eg Dantrium.

Have a look at https://www.mstrust.org.uk/a-z/spasticity-and-spasms

Best of luck

Sue

Thank you Sue

Hi Linda I have taken baclofen for many years and never had a problem with it, but I do appreciate medication can have different effects on people. I agree start on a low dose and increase it very gradually until it helps, and Sue is right, you do need some stiffness to aid mobility, so take care with the dosage as taking too much can cause weakness. I take 30mg at night 10 mornings and 10 lunchtime and that suits me. Wishing you all the best. Pam x

Hi, When you read read all the side effects it can cause concern. When I was diagnosed 25 years ago I was put on 10mg 3 times a day then increased to 30 mg 3 times a day. Been on it a long time now, Find it does help. I wouldn’t worry to much about the side effects you read. The amount of different drugs I take for MS, reading all the side effects does make you think but if its been recommenced by a Neurologist/GP then I would go along with what they say. Take care kielyn x

I find Baclofen a very good drug for stiffness in the legs. Take no notice of the side effects. If the Dr says take it I will. JD

Hi everyone

thank you for your kind reply

Linda x