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
I take Baclofen and like Pam started on a small dose and increased very slowly, I wouldn’t be without it, good luck.
Jean
I tried baclofen in September for stiffness and restless legs at night and it made me feel very tired and really depressed so I weaned myself off it .When I told ms nurse she said lots more drugs for spasticity and stiffness.For now though I just exercise do stretches etc as I have bilateral foot drop .Hoping this will be ok for now .Anybody else tried anything different.?Cannabis drug apparently good but prior to being prescribed it she said I would have to try other drugs first ?Good wishes to everyone keep trying x
I was also misdiagnosed from 2016 onwards .Told arthritis.Not until 2023 confirmed ppms .Crazy as all the signs were there .A physio therapist recognised I probably had a neurological condition over the phone without seeing me and an orthopaedic consultant told me a had an upper motor neurone disorder in 2022 but actual diagnosis took a few more months.Really hard isn’t it? but seems common.Only good thing was told to exercise to help arthritis so started low circuit classes and aqua aerobics and still manage them now although it’s much harder as I have a stick now and walking terrible with foot drop
The best solution to foot drop I have found is the ingenious FES. Your GP can refer you for assessment.
Thanks for that I have the FES from oddstock medical supplied via NHS but unfortunately although it helps it doesn’t completely work for me as I have a lack of movement in my ankles and my tendons and muscles are permanently shortened.I find it’s tricky to fit due to finger dexterity and 4 wires going up through clothes connecting to control packs can be difficult to go to the toilet especially with urge incontinence.I asked for the wireless version which loses one of the wires but so far been refused I also have pes cavus feet so am more unbalanced anyway.Anyone tried the other FES systems available to purchase? Will persevere with FES though as it does stimulate calf muscles and can be used on exercise mode no foot switch .I have to travel every 6 months to Leeds to get it checked but I am lucky to get it as I know it can be difficult to access.
Foot drop braces help a bit again very much trial and error .Tried the braces with the FES on too but didn’t work passing wires up through the brace ankle cuffs . However braces and FES definitely worth a try for foot drop so thanks again for your kind comments