4 replies to this topic

[megatrig]

Hi All,

Ok I know this is VERY individual but............

My consultant is jittery about the amount of baclofen I'm getting.

I'm only up to 600 micrograms now and some relief but...........

Some thoughts and individual experiences would be appreciated.

Many thanks,

David

Edited by Apparelyzed, 13 January 2011 - 08:53 AM.
Title clarified.

[Edinburgh Colin]

I'm only taking 10mg 3 times a day and it barely works but I think something else is going on for the last 2 weeks as this is not usual for me. 600 micrograms seems very little unless my maths is messed up!

[Apparelyzed]

Hi,

I think this topic is refering to Intrathecal Baclofen delivery, using a Baclofen Pump.

When I first started in 1992, I was on about 600µg, but over the years I've reduced it to a point where I'm now on 150µg.

I have reduced my baclofen to a point where I have retained the most spasticity I can tolerate, without it having a negative impact on my quality of life.

Simon

[rattrap]

600 only....you guys are making me worry now...ive been around 1600 for a few years now and been doing great. i dont take any other medication for spasms but it is a hassle having to refill my pump every 40-50 days. however that time should double to every 80-100 days when i get a larger pump.

[megatrig]

Apparelyzed, on 13 January 2011 - 08:52 AM, said:

Hi,

I think this topic is refering to Intrathecal Baclofen delivery, using a Baclofen Pump.

When I first started in 1992, I was on about 600µg, but over the years I've reduced it to a point where I'm now on 150µg.

I have reduced my baclofen to a point where I have retained the most spasticity I can tolerate, without it having a negative impact on my quality of life.

Simon

Thanks Simon,

I do want to balance spasticity as functionally I find it useful and also in terms of keeping tone I think we all know the advantages! Spasm has changed over the last 23 years to become unbearable and has stopped me doing anything. Hence looking at pumps rather than oral meds leaving me spaced out!!

rattrap, on 15 January 2011 - 09:05 PM, said:

600 only....you guys are making me worry now...ive been around 1600 for a few years now and been doing great. i dont take any other medication for spasms but it is a hassle having to refill my pump every 40-50 days. however that time should double to every 80-100 days when i get a larger pump.

Hi Rattrap.

I wouldn't worry I can see myself creeping up to a similar dose. I don't see a need to worry as the way Baclofen is delivered like this is preferabble to popping tablets which your body then filters, as it were!

I now find my bowels are being hugely affected!! Another post soon!!