Hi Guys hope you have sunshine where you are? it doesnt matter how old kids get, my son of 24 had a friend to sleep over last night, followed by three more appreared from brekfast, still seems iam running a bed and breafast. anyway down to my question, started taking Baclofen a few weeks ago after my consultant precribed them, but now could be a coinsedence my legs especialy my knees have swollen up, and they wake me up every couple on hours at night though pain, i have to sit in the bathroom with my feet on the cold floor, could be that it allows the blood to get though to my feet, i dont know.have emailed my MS nurse, hopefully she will get back to me Tuesday, but thought i would ask you guys, any thoughts. by the way only on 10g once nightly.thanks Deborah
Sorry Deborah but I’ve never heard of that happening. I’d phone the nhs helpline or out of hours gp as it’s obviously not doing you any good and your symptoms could worsen if you’re not sleeping well. Please let us know how you get on.
Cath xx
Hi, I’ve just been prescribed Balcofen, in fact, not taken them yet but I also have the swelling of the knees. I asked my doctor about it couple of days ago and he said it could be with lack of movement which makes sense. So it could be a coincedence but no harm in checking it out with your doctor or ms nurse.
Hi Deborah
Sorry to hear about this, as Baclofen is the one thing that ‘lets’ me actually get some sleep at night. I was struggling with quite severe spasms / spacticity for some time, to the extent I could not sleep, was kicking and jerking, causing my wife to sleep in the spare room. I take 30mg (3x10mg tabs) every night just before I go to bed, and it really does help me get to, and stay, asleep for goodish stretches.
However, I do worry about the side effects. I’ve been on this dosage for nearly a year, and for the past 8 months or so have noticed real changes in my mood, concentration levels and propensity to anger. I’m also having very vivid dreams where I shout out in my sleep and flail my arms around (…wife now used to it!). Whether this is all baclofen related or not I don’t know, but seeing as I’ve probably had PPMS since 2008 but only taken baclofen since May 2013, I strongly suspect it plays a role. I tried going back to 10mg but my legs just went bezerk all night.
Hope things get better for you, but I would suggest that if it is pain rather than stiffness/spasming waking you up then you might need something other than baclofen to help. Am sure you’re neuro could clear this up.
CP
I used to be on Baclofen but now on Tizanidine and have tried a couple of others which didnt agree, there is other stuff out there ask to change and try and find one that suits you. I am sure the MS nurse will have some ideas.
PS wean yourself off of them dont just sstop
Don
The other thing with Baclofen was kidney stones I had real trouble with them but I had upped the dose to lots per day and got gravel in urine and huge stones. Stopped Baclofen and never had another stone maybe coincedence but me thinks NOT
Hi Guys Thank you for your comments, I have sent the email to my MS nurse, but won’t hear from her till Tuesday. Think I can wait it’s only one day, but appreciate all your comments as always, it make such a difference to know that I can ask people that suffer the same as me. Is all a bit fraught here as my Dad has just under gone triple heart by pass, and is in ICU as there are complications, the trouble is he and all my family live in Australia. So those of you that pray say a little one for him please. Thanks Deborah
Take care Deborah, yes, saying a little prayer. Even tho you couldn’t help it must be tough being so far away right now so thinking of you too hugs
Sonia x
Hi Deborah
My thoughts are with you. It is really difficult when loved ones live so far away, my only sister has lived in Australia for 40 years now, so I know how you feel.
(((((Hugs)))))
Pam x
Hi Deborah, Hope you will soon get the baclofen sorted. I’ve never heard of your type of reaction but never the less I think it’s something that you need to get sorted. Hope your nurse will come back to you tomorrow. I do hope your Dad will be ok after his op. I used to live abroad so I do understand how very hard it can be when loved ones are so far away. Sending hugs and very best wishes, Nina x
Hi Deborah The side effect that I was warned about was that baclofen would weaken muscles. I started on a low dose 5mg twice a day, to help with the spasms, but when I started gabapentin for the ‘burning’ legs and feet, they cut the baclofen dose to 5mg once daily. This is really because my muscles were severely weakened by chemotherapy for lymphoma 4 yrs ago, and they have never really recovered properly as the ms kicked in. The other thing I understand about baclofen is that it is one of those drugs that works by building up and maintaining a background level in the body over a period of time. That would suggest that any side effects would reveal themselves gradually, rather than after a few weeks- but I’m just guessing. Tough times, hang in there. Kev x
Hi Guys Just to update you on my Dad in Australia, he is in ICU heavily sedated and being pumpt with antibiotites as he has developed pneumonia, but spoke to my Mum and he is in the best place, keeping everything crossed, thanks for all you good wishes, Balconfen spoke to Zoe my MS nurse, she said she hasn’t heard of these symptoms,we have decided to keep going with the Baclonfen until I see my OT lady Jane next week, Zoe with see me as well that day and we will take it from there. Sorry long message but thought you would like to hear. Thanks again Deborah
Thinkng of you and yours Deborah, Sonia xx
Also thinking of you & yours.
Pauline xx
Also thinking of you & yours.
Pauline xx
Any news? I saw the MS nurse today and we spoke about a Baclofen Pump???
Hi Guys Well I’m now on 3 x 10mg a day, haven’t noticed any difference yet, but I bit light headed, I think this is only expected when taking a new drug. Had an appointment with my Phyiso and she looked at the swelling in my legs, she dosnt seem that concerned, she said its something that tends to happen with the lack of mobility. She said she would tell my nurse, as she wasn’t in her office that day of my appointment, she was at another hospital. Deborah
Hi Deborah I got up to about eight a day which I think is max but stopped them in a fit of angst. In fact I stopped everything for a while rebelling against the MS and anything to do with it. That didnt work either but sure a hell made me feel better for a bit until the antidepressants came out of my systemI very soon restarted them but left all other meds for about a year. that was about five years ago. I am now considering a baclofen pump but what do I know. Hope theynwork for you.
Don