Baclofen

[Guest]

Evening
What meds are we all on?, I have been on Baclofen for some time now, started at 20mg but im up to 70mg a day.


Im not sure its working the best and im going to discuss with Neuro at next appointment, what other options are there?

[Terry]

Hi Mcgraw,

I have tried various levels and it doesn't make much difference with me. 70 mg is quite a lot,, I have tried 80 but I am quite a big chap and was very active then.

I still take 20 mg of Baclofen but I really should try with out it. There is another drug that supposed to do a similar thing but I have not tried it.

Perhaps try having less but reduce it slowly.

Love Terry

[mcgaw81]

I tried the other one, but it made me very fatigued and droozy. I might reduce slightly daily and see if it makes a difference. My Neuro said I can set my own dose up to 70mg a day

[Ellie]

Hi John,

How much spasticity do you have and where?

I take 20mg Baclofen t.d. and a small dose of Tizanidine (is that the other one you tried?) at bedtime as my spasticity is worse at night and it makes me sleepy. I regulate my meds myself.

I also had Botox in my legs a few years ago which relaxed tone.

If you're on Riluzole, taking Baclofen at the same time of day may make you more fatigued, so stagger the meds.

Ellie.

[Terry]

I was told that I could have a 100 mg a day John;

But if it does not appear to change much and you can live with the muscle tightness then it's best not to take them. They probably take a couple of weeks to get out of the system. I would reduce it slower, maybe one each of the first two days and then one every five days. I stopped taking my morning one today.

To be honest, I have only kept taking them to keep the doctors quite. There are many different types of Mnd so Baclofen works for some and maybe not others.

Keep us informed, Love Terry

[Ellie]

To be honest, I have only kept taking them to keep the doctors quite.

It won't surprise anyone to hear that I don't do anything to keep the doctors quiet

Baclofen can go up to 120mg/day. PLS tends to cause greater spasticity than ALS.

Love Cheeky Chimp x.

[mcgaw81]

Its my legs that are the problem, esp behind my knees and around the hip area. After sitting it takes me a long time to stand straight due to it.

Yes Tizanidine was the other one I was one, but only got to 30mg. I am not on Riluzole only the Baclofen and 15/500mg Co-Codomal for the pain I get due to the stiffness in my muscles.

I need something because, I can deal with the tightness/stiffness but I need to keep mobile as much as possible and I think they do help, but don't think I would know unless I reduce dose and see if there is a difference. However I don't want to go back the way..../

[mcgaw81]

Hi John,

How much spasticity do you have and where?

I also had Botox in my legs a few years ago which relaxed tone.
.

Ellie.

Yes the Neuro has suggested Botox, did it make a big difference?

[Ellie]

John,

30mg Tizanidine would send an elephant to sleep! The cocodamol won't help energy either (& will bung up your bowels too!)
Have you a physio? Range of Movement exercises will help. I have regular hydrotherapy in a hospice, which is amazing for tight muscles. You're right, you have to keep the joints moving; a neuro physiotherapist can show you ROMs.

I posted this on another thread a few days ago:-

I had Botox in both legs to relax muscles. I had it done using EMG needles, to ensure injection was made into correct area of the muscle.

I was concerned that muscles might be too relaxed and hinder standing transfers, so got a half dose of 75 parts. It relieved spasticity to some degree, I subsequently got the full dose. It lasts about 3 months and I found it painless.


I type using eye gaze, so forgive my shortcuts!

Ellie.

[Terry]

Hi John;

Have you done anything in changing you meds?

I have reduced the Baclofen to one every night for a couple of weeks and don't think it's made much difference.

Love Terry

[Boiler68]

Hi folks

My husband has ALS and although reluctant to take medication he's recently started with amitriptyline for saliva control. Also takes rilozule. We've got a gp appointment on Monday. Can I ask is baclofen the recommended drug for back spasms? He's been in agony over Christmas; it comes on very suddenly when he's upright and it makes him gasp with pain and he's doubled over with it when it occurs. Just wanted to know what was best, dosage, and if ok to take with the other things. From what I've read on here and with new gp I don't have much faith in the gp being clued up on this. Thanks xx

[Barry52]

Hi Boiler,

Baclofen is a muscle relaxant and whilst I am not medically qualified I don’t think that this drug will help with pain caused by spasms. If you are not confident with your husband’s GP then maybe you can contact his neurologist.

Best wishes,
Barry

[Ellie]

Hi Boiler,

Yes, Baclofen is an antispasmodic medicine which reduces muscle tone in the body.

Given the spasm is localised, be aware that antispasmodics may lower his muscle tone in unaffected muscles, which may be problematic - getting the right dose and balance of functionality is key.

Maybe a muscle relaxant, e.g. Diazepam, would be better, given the sudden onset of spasm.

In the meantime, heat and massage (try using magnesium oil) may take the edge of his pain, but for bad spasm, meds are probably needed.

Good luck.

Love Ellie.

[Guest]

Hi Boiler68.
Baclofen is used for muscle troubles with ALS, more in the USA than Europe it seems from looking at evaluations on PLM.
I have got my Doctor to prescribe here in the UK. I take 10mg when I struggle from bed in the morning and another 10mg for the afternoon.
I second CBD oil which also seems to help.
https://www.patientslikeme.com/treat...condition_id=9 ( Baclofen , Click on Evaluations numbers )

https://www.patientslikeme.com/treatment/cannabidiol ( CBD )

I Wish you well with your Husband and the best of luck.

[Boiler68]

Hello Barry, Ellie and Tiandb

Thanks for your advice. I did ring the MND team at Salford today but it's not a phone that's manned all the time so we've not had a reply yet. Hopefully they'll catch us before the gp appointment on Monday. Hubby does have cbd oil here and I have told him about the magnesium too. He's currently got a hot water bottle behind him so is comfortable at the moment. Thanks again

Xx