Baclofen

[Helen119]

Hi can you tell me what dosage of baclofen ( if your using) people are taking. Is it helping anything?

Love and hugs Helen xx

[kenh1]

We have been on 20 mg twice a day. Morning and evening. The prescription is for three times a day which made my wife very drowsy. So I dropped it to twice a day. This has worked well for more than two years.

[Helen119 in reply to kenh1]

Thank you very much that’s just what I needed to knowxxxx

[kenh1 in reply to Helen119]

Thanks for your reply, there have been a number of posts re concerns about Baclofen. My own experience has been very good. Hope yours will be the same.

[Helen119 in reply to kenh1]

Thanks xx

[Kevin_1 in reply to kenh1]

Hi Kenh

You might want to see my post to Helen below.

I have no experience of Baclofen, but looked it up.

What are your thoughts on this?

However I see Baclofen comes in 10mg tablets too... I am confused!

Best to you

Kevin

[Helen119 in reply to Kevin_1]

Thank you xxx

[kenh1 in reply to Kevin_1]

My wife is fed by tube so it is 20ml I.e. 2 x 10ml syringes to give a 20 ml dose. I am not currently at home or I would have looked at the nurses medication sheet which I should have done before replying.

[Kevin_1 in reply to kenh1]

No worries

Thanks for coming back.

Is it for stiff muscles? Spasms?

I think it might be something we will need to consider in the future.

Best

Kevin

[kenh1 in reply to Kevin_1]

Yes, both stiff muscles and spasms and it seems to work very well.

[Kevin_1 in reply to kenh1]

Thanks kenh1

I'm putting on my contingency list

[Helen119 in reply to Kevin_1]

Yes Colin’s muscle spasms are ridiculous, and quite constant, some last 10 to 15 mins, and they cause pain, so I’m hoping this helps.

Love and hugs to you both Kevin and Ken thanks for info xxxxx

[Kevin_1 in reply to Helen119]

Gosh, Colin that sounds horrid. I hope you get some relief soon.

Best to you

Kevin

PS - It's Kenh1 who put me up to this. His info entirely

[Katiebow]

Hi Helen, Ben didn't respond to baclafen, it all very hit and miss with the different drugs it seems.

Love Kate xx

[Helen119 in reply to Katiebow]

I know, but worth a try thanks Kate xx

[Katiebow in reply to Helen119]

Certainly is, I think lots of folk with PSP do respond well to it. Xxx

[Kevin_1]

Hi Helen

Quite a few folk here have said they do well on it.

However I am aware that the manufacturer has issued warnings about using it orally.

"Renal impairment

With oral use

Risk of toxicity—use smaller doses (e.g. 5 mg daily by mouth) and if necessary increase dosage interval; if eGFR less than 15 mL/minute/1.73 m2 manufacturer advises use by mouth only if potential benefit outweighs risk.

Excreted by the kidney."

This is from the British National Formulary - The standard handbook for medication in the UK.

bnf.nice.org.uk/drug/baclof...

It would appear that regular kidney function tests would be advisable.

Just thought I would flag this up for you.

Warmly

Kevin

xx

[Helen119]

Thank you we are just increasing to 20mg 3 times a day, so will talk to doctor about this.

Thank you xx

Love and hugs xxx

[Kevin_1 in reply to Helen119]

Good luck - please come back and tell us if you would.

xx

[Helen119 in reply to Kevin_1]

I will xx

[daddyt]

I take Baclofen twice a day... 10mg at lunch and 20mg in the evening. It's not the cure-all but definitely helpful.

[Helen119 in reply to daddyt]

Thank you xxxx I’m hoping it will be for Colin xxx

[Cuttercat]

We had 10 mg three times a day. Unfortunately it wasn't helping and eventually we stopped. It can interfere with other meds. So be sure to check but it did help for a time early on.

Cuttercat