Baclofen on a PAYG Basis

[PaulX]

I have previously been on Baclofen, taking it the recommended 3 times a day.
It proved to be problematic, with some unwanted side effects. Side effects I couldn't live with.

Wind on a few years and I at the point I really do need something for the spasticity and it is affecting my sleep and making the fatigue much worse.

I have spoken with my MS nurse and she has suggested taking Baclofen on an as needed basis rather then religiously taking it 3 times a day.

Has any one else tired this and has it worked?
Has it helped get round the side effects problem?

I must admit I am a bit sceptical, but prepared to give it a go, nothing to lose by it.

Paul

[Marina]

I take Baclofen too. For me, it's about the only med that I can without having any side effects (that I'm aware of).

 

My neuro originally prescribed it as 1 x 10mg in the morning and 2 x 10mg at night. Sometimes, I've taken an extra one in the middle of the day. Other times, albeit rarely and only for a few days, I've upped the dose to 2 x 10mg 3 times a day with no problem. But that doesn't help your question as you get side effects when on it long term and I don't.

 

However, I was prescribed Tegretol years ago, for TN. I stopped it after 3 months or so as it gave me headaches (sounds contradictory, I know!). At the time, my neuro said it was fine to take it on an "as and when needed" basis, although my MS nurse seemed a bit shocked about it. And that's what I did. But from time to time, I'd take it daily again as the TN was driving me nuts. Then I'd stop it again due to some other side effect...

 

About 3 years ago, I started taking it again, even though it seemed to have stopped helping my TN, as I found it helped a bit with the horrible inner vibrations in my feet, legs and abdomen. I took it daily for at least 2 years, having forgotten all about any previous side effects (doh..! ). Several months ago, it dawned on  me as to why I might've slowly put on 2 stone in weight (having always been a light 8 st, this was a huge amount of weight for me). I came off it and it wasn't long before half a stone fell off, and I'm now almost back to my old weight. And I take one as and when needed, maybe not for more than 3 days on the trot though, and I'm fine with that. For me, it seems like side effects from Tegretol come after a build-up of using it daily for several weeks or months.

 

I tend to do the same with other meds like, for instance, Propranolol (for shaky hands) and Modafinil, not that either of them give me side effects that I'm aware of.  I can't take Amitriptyline (or any anti-depressant), Gabapentin or Pregabalin due to side effects, so I can't speak for those.

 

So the moral of my story is that if your MS nurse has suggested trying it on an "as and when needed" basis, it might well work? Maybe not quite as well as it should when taken daily, but might help for when you really need it?

[PaulX]

HI Marina,

I hope you are well.

 

I have had a few days of PAYG Baclofen. Only half a tablet at a time, as suggested.

I do think it might be helping. It is always difficult to tell as things tend to come and go on their own anyway. But my gut feeling says it is. And no noticeable side effects.

My go to solution for leg related problems has been No-Spa, but since that is bought of the internet and originates from Poland, Brexit and a control freak government may well put and end to that. Hence the need for an alternative. Plus, since I have shelled out for a pre-payment card, I'd rather have my relief on prescription. 

 

Amitriptyline is horrible. I have sleep problems so that was suggested, but it doesn't agree with me. Instead I have Mirtazapoine. Another AD but is does seem to help with sleep. Almost too much. And no unwanted side effects. Almost the opposite. 

 

Paul

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Edited 12 Apr 2019, 3:00 pm by PaulX