Hello all
Newly diagnosed with PPMS after being missed from MRIs in 2018 & 2023. Was told it was nerve compression in my spine over 10yrs ago so came as a shock in June this year. Im 57yrs old.
Started taking Baclofen 3 days ago & side effects are bringing me down & having no affect on my leg pain.
Can i ask what other peoples experience of Baclofen are please?
Just looking for some reassurance xx
I found Baclofen helps stop painful spasms in my legs.
It took a few weeks to get used to it.
I also take Nortryptaline for nerve pain in my hands and feet and it helps me sleep at night.
It can be a case of trial and error with drugs but don’t give up too soon unless you have serious side effects.
You can speak to your MS nurse if you have any problems and want to change medication.
Apart from me being male, there are many similarities with us!
I was diagnosed 4 years ago after being missed a few times. Was also suspected of spinal compression but for me the misdiagnosis for nearly 10 years was spinal stenosis.
Also on baclofen and they recommended a ramped uptake. I was on 20mg/day but built up to it over a week or two, and yes it did make me feel a bit queasy at first. I’m now on 30-40mg/day. Initially it was of dubious benefit but I wouldn’t be without it now. 4 years on, the spasms and rigidity are much worse and baclofen does seem to help.
Unlike Clare, Nortriptyline was disastrous for me, turned me into a zombie. So we’re all different. If you don’t think something is working, or worse, is having a negative effect, make some noise and ask to try something else.
Graeme
Hi
Welcome to the forum. With baclofen I found I had to start on a very low dose and only increase it very slowly, which helped keep side effects down.
Hope this helps take care
Pam x
Helps so much as its the reassurance i was looking for x
Thank you so much - good to know that its likely to take time as we all experience things differently - im on 10mg/3 times daily & have started to space out the duration between each dose - sometines its best to try & understand ourselves 1st x
Thank you so much for your reply x
I emailed my MS nurse who said that symptoms i was having, were not typical to Baclofen.
This is why i messsged here - real people wirn real experiences & sonetines the best place to get advice.
Please dont think im negating what my Nurse has said - we’ve only met once ehich i guess was a formality - she’s yet to know me personally which i totally understand - i just wanted some reassurance but was left with more questions x
Hello again Paula
30mg/day is quite a lot to be taking early on, so it’s perhaps understandable you have been getting some reaction to the baclofen.
As for timing, baclofen is very timely as in you take the tablet and it will give a few hours benefit before wearing off. For me, my stiffness & spasms are worst first thing in the morning, so I take a tablet during the night (always need a pee or two overnight) so it helps in the morning. When on the lower doses (20mg) I was using a pill cutter and taking 1/2 tablet 4x a day.
Dear Paula
Look on these web pages and others M S Trust. Knowledge is power avoid
social media, it’s scary but we have all survived! M x
Good advice … thank you x