The tablets u are going to start can and does make u tired.I was on them for years.came them month ago as physio felt they were not much for me.don’t feel any worse for coming off them.
Did they make you tired, as in sleepy, or fatigued as in the MS type of physical fatigue ?
As we all know there’s a remarkable difference in the two types of fatigue, and trying to explain MS fatigue to someone without MS can be difficult.
- oooooopoooooops. Did I say the wrong thing there I’m sorry I maybe should have said that it is one of the side effects that occurred with me . Didn’t mean to scare you off them.
No of course not.
I’m just curious what type of “tired” it made you.
As you know sometimes when “we” (ms sufferers) try explain the fatigue feeling to someone who does not have MS they can automatically think we just need a cat nap, when usually it’s that wiped out totally drained muscle fatigue.
In the 4 years that I’ve been diagnosed my fatigue has never really made me feeling “tired”, as in sleepy, it’s always been total wipe out of my legs, usually after not taking a rest when I’ve pushed myself a bit too far, ie going past your limits.
It’s sort of like a half hour sit down gives me a little “re-charge” that allows me to carry on for a bit longer.
Dont get me wrong, there are days when my fatigue is so bad that it feels like my legs are tied together and I’m trying to walk through cement, but I’m never sleepy tired with it.
Hope this clears up what I meant by asking which type of fatigued Bacolfen brought on with you.
- Thanks for your post.I realise what u mean my fatigue is awful if I have as you say stretched myself I usually need to either sit or my down to see if it will pass .the pills made me sleepy within half hour I was nodding off in fact it’s a standing joke with one of my granddaughters
- “She says theres granny fainted again”.
I’ve just rang my GP to put in prescription, so I guess I will be giving them a go over the weekend.
I think I’ll start off with 5mg at night then go from there ?
I’ve taken 10mg at bedtime since last Monday. My knees are no longer stiff and painful and my sleeping is much better.
Just picked up the tablets, so I’ll be starting this weekend.
I’m going to cut the tablets in half to start off with (5mg) and see how things go.
The starting prescribed dose is normally 10mg. I don’t think mg will have any affect to be honest.
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10mg is whats written on the dosage, but my neuro and MS nurse both suggested to start lower (5mg), just to get it into the system, then increase to 10mg over a few days if no side affects are felt.
I think the concern is that it could make you feel weaker than you already feel, which to be honest was also my main concern.
I cant really see the point in taking something that might help with stiffness ect, but then weakens you even more, which would just be adding to your problems.
- Hi it’s Rosie again,I don’t blame your way of thinking.at first I was on four times a day.neurologist cut me to two then said to see how I felt with none.I didn’t feel and worse when I did stop them.doctor felt that they weren’t helping me and that’s what could be making my fatigue worse just remember everyone is different.take care anyway
So I’ve been on the Baclofen for almost a week now and personally I cant see or feel a difference in symptoms, good or bad !!
My legs still feel rigid when I first stand up or get out of bed in the mornings.
I’ve just come back from a long weekend in Majorca and found that my walking/stiffness was the same as before I went.
I’m also taking Gabapentine, which I’ve been on for about 3 or 4 months, 3 x 300 mg per day, one in the morning, one lunch time and one at night, again I dont really feel it’s making a difference, in fact I might even suggest that the tremor like sensation in my thighs when walking is slightly worse ?
So my plan now is to cut back on the Gabapentine over a few weeks, and then probably stop altogether, which is something I’ve thought about for a few weeks now, but stick with the Baclofen for while to see how things pan out.
If like the Gabapentine I dont feel theres a difference then I will stop the Baclofen as well.
My neuro said when he put me on the Baclofen that the window for seeing positive results is very small, in fact he said research show’s that the numbers for people with MS are far higher who have reported either no change at all, or that they feel weaker after taking it, than before taking it, and within a few weeks have stopped taking it, as opposed to more positive results.
Annoyingly it’s hard to say with MS whether your drugs aren’t effective, or maybe it’s the MS just getting a better hand over the drugs at that particular time !!
Thanks for the update Jactac.
I’m not on anything else (other than vit supplements) and am finding the Baclofen very helpful. I am prescribed 10mg dail, but Neuro did say I was the best judge of what works for me, to increase or not. So I have found I only take my 10mg, when my knees are feeling particularly stiff/rigid and painful. This is working well for e so far.
Had a meeting with MS physio yesterday and mentioned that I thought the Gabapentine was doing nothing and that I’ve seen no real change after starting the Baclofen.
She was concerned that I might not be waiting long enough to see if theres any improvement in my symptoms, so basically asked me NOT to stop any of the meds yet and wait at least another month the if I decide to come of any of them do one at a time slowly.
In fairness I think she’s probably got a good point, because I only gave the Amantadine 2 weeks then stopped it.
So my plan is to carry on with the Gabapentine and Baclofen for a little while longer and see how I feel in a few more weeks.
So a bit of an update since posting about “first time on Baclofen”.
Well as I previously mentioned I started on Baclofen back in February, 1 x 10mg twice day, alongside the Gabapentine that I had been on for ages, 1 x 300mg three times a day.
So then, it’s been over 4 months now since combining these meds and if I’m honest this has probably been the worse 4 months since being diagnosed with the MS .
The stiffness in my legs has gradually got worse and so has the surge like sensations when walking.
I literally walk like a robot first thing after getting out of bed until I can sort of walk it off, but not completely.
I’ve had 2 consultations with the MS clinic over the 4 months and numerous “chats” over the phone to try and "tweak the meds, but with no success.
At one point 3 weeks ago it was suggested that I increase the Baclofen to 3 x daily, which I did but had to stop after just 3 days due to giddy horrible headaches, and worsening tightness in my legs, at least I thought the Baclofen was causing them.
I’ve actually sometimes felt that the Baclofen has been having the opposite affect to being a muscle relaxant ?
I’ve also had to have more time off work in the last 4 months than I have in the 4 years since being diagnosed.
So going forward then, well I had another “chat” with the MS team last Tuesday (MS physio nurse great, MS Specialist Nurse waste of time him being there), and basically I’ve asked to come off both Baclofen & Gabapentine so that I can start with a clear baseline and then find out if I was worse due to the combination of meds or that the MS has gradually worsened.
Either way the meds that I’m currently on are not helping with my symptoms so I cant see the point in popping pills just so that my MS Specialist Nurse can jot down in his notes thats he’s dealing with my issues, when in fact unless I ring the clinic to keep the lines of communication open I reckon he would never contact me to see how I’m getting on !!!
So today is the 2nd day without Baclofen, and I dont really feel any better or worse, which is how I felt when taking it, and for the next week I will be weaning myself off the Gabapentine, so by this time next week I wont be on anything other than my basic D3.
My intentions are to see how I feel when “clean” ?
Is my MS better, worse or exactly the same without the 2 meds I’ve mentioned ?
It maybe a case of going back on the Baclofen but without the Gabapenine or vice versa or try something else, but I think I’ve got to the point where by just taking meds daily without having a clean baseline to work from is just fogging everything up.
I guess I’ll be getting back with a further update in a week or two ?
Being clean as you mention is the same way I chose to go, after these pot luck medications the experts advise.
D3, B’s, C’s & so on. With Oils & minerals is the way to go. Naturally if possible, in foods.
Getting on with life & improving the health in general. Avoiding the stress creators.
Take it easy out there.
Best regards Terry
Sorry to read this Jactac. I started Baclofen about two or three months ago and I’ve found it very helpful. Prescribed 10mg once a day by my Neuro, telling me I was the best judge of how to increase the dosage or not, I’ve found it’s enough for me. Whilst I’m never going to be doing the Cancan, it has helped with the pain and tightness in my knees and, if taken before bedtime, helps me sleep. I do hope you find something that helps eventually.
I purchased some medical stockings to help with leg issues. Support & circulation. They’re awesome!
Good luck with the medication venture.
If I’m honest my local MS clinic seem to be offering a very basic “give this a go” sort of attitude, especially my MS Specialist Nurse.
It always seems to be me thats putting out suggestions, rather than them offering sound advice !
I ALWAYS have to ring them to ask to be seen or ask for advice, rather than be given follow up appointments.
It was my wife who really wants me to flush everything out of my system and then perhaps we’ll have a real understanding of how/if the MS has progressed without the intervention of any meds.
I did get an MRI scan recently that showed no added lesions since being diagnosed, or increase in size of current lesions (3).
So thats good eh ?
Anyway, I’m going to try this cleanup for the next few weeks then see how things pan out.
By the way, my Specialist Nurse told me that 10mg of Baclofen twice a day was the max dose of Baclofen, but the MS physio put me on 3 times a day and even said the dose could go higher if tolerated ?
So that might be an option further down the road.
I say “Specialist” whilst I’m biting my lip trying not to laugh.
They must seem special, when cruising back to their farmstead in a convertible, with their shades on.
The MS isn’t their problem, once they clock off.
The person with the problem, has to deal with it alone & that’s the truth.
Offering me 3 of anything these days & alarm bells ring. It reminds me of a Neuro psychologist who tried to tell me that the lesions were causing me to act a certain way. I’m doing far better not listening to others advice & we should all do the same.
Use the selective hearing programme, installed in our human nature.
People only listen, if it’s interesting. I’m sorry, if you’re thinking of killing yourself, but the match is on, or shopping needs to be done. Can you hurry up, please.
Terry
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