First Time On Baclofen

Everyday living
41

So I’ve been completley off the Baclofen now for over a week after cutting the dose down gradually, and if I’m totally honest I cant really feel a difference, good or bad, definitely no worse being off them, probably about the same overall ?

Interestingly I started to reduce the Gabapentine last night by not taking the early evening tablet, and I had a fairly restless night which seemed to result in every time I woke up my legs would go into a rigid spasm for a few seconds, something like you do when you stretch really hard when waking up in the mornings, if that makes sense, but with this it was happening by itself immediately as I woke up ?

I also noticed that my legs felt extremely stiff and rigid far longer after getting out of bed than they normally do.

I’m now wondering if the Gabapentine is helping more with the stiffness/heavy ness in my legs than the Baclofen was, and just reducing the Gabapentine last night by 1 tablet has made this difference ?

Maybe it’s the Gabapentine doseage that needs tweaking ?

I’m still going to go ahead and completely stop the Gabapentine, which should all be done by this time next week, then I will see how things go from there.

I’ve kept a small diary from the last week or so just to make a note on how I’ve been feeling coming off the meds, but like I’ve mentioned I cant really feel anything good or bad that has happened apart from these rigid spasms last night in bed and again when I got out of bed this morning.

There was a mention in the meeting I with the MS team about possibly giving Pregablin if I thought the Gabapentine was not working but at the moment I just want to get to a clear baseline to actually see how the MS is without any drugs, and then go from there.

42

Ok so I’ve now been completely free of Baclofen for around 3 weeks and Gabapentine for about 2 weeks.

After coming away from the Baclofen I didnt really feel a difference, good or bad.

However, since weaning myself away from Gabapentine I do feel a bit stiffer/heavier in the legs and the jerking seems a bit more evident, also both my legs get restless, like I need to keep moving them but dont really want to, if that makes sense ?

So yesterday I rang my MS Specialist Nurse to explain how long I’ve been off the meds and also how my symptoms are since doing so, he is now recommending that I give the Pregablin a go, which I’m a bit cautious about after reading some reviews, especially the weight gain bit !

He (Nurse), said that Pregablin and Gabapentine are used a lot for MS spasticity and spasms, yet I thought they were a pain killer ?

I dont get any pain as such, but do suffer from this rigid spasticity and heavyness.

As for the Baclofen he said wait a bit to see how the Pregablin works out, especially as I didnt really feel a noticeable difference coming off it.

Apparently Baclofen comes out of the system a lot quicker than Gabapentine so by coming off the Baclofen before the Gabapentine I would of felt a difference almost straight away if I was going to feel anything, which I didnt, but I did feel more rigid when the Gabapentine started to come away, hence is advice to try Pregablin !

He also suggested that Pregablin can help with anxiety, which is starting to creep in more and more if I’m honest.

So I just have to wait now a few days until the MS clinic gets in touch with my GP to arrange the prescription for the trial of Pregablin and see how things pan out.

I guess I’ll be getting back on here over the next few weeks with yet another update !!

1 Like
43

So then its that time again, LOL.

Ok just a quick update.

I’ve stated on Pregablin last Monday but only on a very small dose, 50mg twice daily, this was my GP’s idea just to get into things slowly.

I’m not having any negative feelings at the moment, in fact dare I say within about 2 to 3 hours of taking the tablet I “think” I feel a bit better, but this could just be wish full thinking ?

Any way over the next fortnight I’ll be increasing the dose and see how things go.

44

Great to have an update Jactac,

Hope it goes well.

Jen x

45

Well its been a while now since my last update, so here goes.

I’m still on the Pregablin but the dose has been increased to 100mg twice daily, basically because I was not seeing anything happening good or bad.

In general I’ve had a crap time over the last few months, my walking is very unsteady and after just a few yards I really have to concentrate on my steps or I’ll just trip over.

My left foot seems to not “flow” through when I walk, it sort of stays in a 90 degree angle to my leg, and sometimes catches on floor.

My coordination is poor, climbing stairs is a pig, especially if I’ve slightly pushed myself.

First thing in the morning I’m so stiff I walk like a robot.

I’ve also been trying to lose a bit of weight, i’m not greatly over weight but I could with losing about a stone I guess, however even after cutting out the crap food and only having a drink on weekends, which is my biggest change, I’ve not lost an ounce, nothing at all !

So I’m wondering could thid be the Pregablin ?

I was on Gabapentine for a long time before the Pregablin, but I’m not sure if that had weight gain side effects like Pregablin is supposed to have ?

I have an appointment this week with a neuro, but it’s not my usual one, If I’m honest I think this could be a good thing as I’ll bev have an opinion from another angle, however I’m sure she is going to say I’ve progressed, which if I’m honest will not come as a great surprise.

I maigt ask to stop the Pregablin as I’m really not feeling any benefit, even with the increase in dosage, so perhaps it might be time to try the Baclofen once more and perhaps increase the dosage which is something that was not tried the last time I was on it ?

So anyway I’ll see how things go from here !

46

I started on Baclofen a few days before Christmas. At first I was very wary of it but I have to say it has had an immediate effect. I started with 5 mg and have stayed with that twice a day. My spasms have reduced to the odd occasional and the pain has decreased to very rare. It does make me very tired but I am hoping that will ease with time.

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your updates have been very useful Jactac, thank you.