Good afternoon guys and girls :)

Primary progressive MS
1

I hope everyone is doing well and not letting the MS life get to them :slight_smile:

I had a quick question on Baclofen, I’m on 10mg twice a day and it is having minimal effect, I can’t quite stop taking them as they make me worse without them now which is weird. But anyway, my physio suggested 5 mg three times a day, but I haven’t taken any yet as a result of getting up stupidly late (too many long nights, body must have needed it) So my question was this:

I know to not mess around with drugs and such, but do you think it would be safe to take 20 mg of this to see if it helps? Just as a one off, cos 10mg really isn’t a big dose?

Any help would be great, thanks :slight_smile:

Dave

2

Hi Davettn,

I’m also currently on 10mg 2xday for the last 2 months, they are having a reduced effect, I was advised by consultant that I could increase to a Max of 60mg over time however they do apparently weaken the muscles, as I have weak leg muscles I think I shall discuss further with my g.p.Sooner keep what muscles i do have left,The physio did tell me today that 20mgs is a low dose.

Pauline

3

Hi Dave

I was told to start on 10mg and increase slowly, no more than 60mg per day. I take 20mg at night because I dont tolerate medication very well, but 20 is still a low dose I believe.

Is ut worth having a word with your ms nurse or gp?

Pam x

4

Hey guys, I ended up just taking two lots of 10mg anyway, I did phone my MS specialist but she handles the whole of the southwest so she is usually very busy, I’m not too sure if it’s actually improved anything >=| So when she does call I think I’m gonna ask her about other drugs, cos I don’t really fancy taking something that’s gonna waste my muscles away!

Dave x

5

Hey Dave, I was corrected by my g.p today re: Baclofen, he said the rigidity helps with retaining muscles therefore with increased dose they become more relaxed (used less).

Pauline

6

Hi, I don’t use Baclofen, but taking Pauline’s point, I do find my walking a bit better when I have spasticity in legs… at least they hold me up. It’s when they have that awful weak feeling that it’s so difficult to walk. Pat xx

7

HI Dave

I take 30mg just before bed but nothing during the day as they make me too sleepy. If I start spasming then I just get up and walk around. They do help me sleep, but at the moment I am in a hell-pain scenario with my right foot&ankle so need some kick ass painkillers.

If I were you, I’d try 10mg twice during the day and see how sleepy they make you. All best, CP