Baclofen for RLS experiences?

[MrVimes]

I have been tapering from Mirapexin to pregabalin for over three years. However, my question is not about that.

My nightly symptoms include the weird sensation in my legs that no one can accurately describe, and my legs twitch and jump about a lot, which is the symptom that keeps me awake.

In a recent conversation with my Doctor, she focussed on the latter and asked if I would like to try Baclofen, a muscle relaxant, to see if it helps. Since I am ready to try almost anything, I accepted. She has prescribed 10 mg tablets to be taken 'as required', e.g. only when my symptoms are at their worst. However, the prescription label tells me to take half a tablet three times a day with food.

Since I only know that I will have a bad night when I am having a bad night, I cannot meet the 'as required' advice.

I wanted to see if anyone has had any experience (good or bad) with this drug or if anyone has any views or advice they can offer before I try them.

[Joolsg]

My sister and I have both used it for MS spasms. That's what it's usually used for. We never found it particularly helpful, so both switched to medical cannabis which actually works much better.

The twitching symptoms you describe are exactly what I experienced during Ropinirole withdrawal.

I haven't had them at all since 2016 when I stopped Ropinirole.

What dose are you at now on Pramipexole? I think a 3 year withdrawal is the longest I've heard of.

[MrVimes in reply to Joolsg]

Thank you for your reply. I will try the Baclofen and see if it reduces the twitching symptoms until I am off Mirapexin. I am down to 1.5 tablets (from 5) but have struggled to get any lower, probably because I have been taking them for over 20 years. I am trying to reduce them by 1/8th a tablet per week to see if that works.

[Joolsg in reply to MrVimes]

It is unbelievably difficult to get through withdrawal. I just wish doctors realised how hellish it is.But keep going.

Once you're through withdrawal, you realise how much worse the Pramipexole was making the RLS.

[rmbroadh in reply to Joolsg]

I am considering med. Marijuana. Could you tell me what you take, the mgs and when you take it. I'm a little leary about using it.Thanks

[Joolsg in reply to rmbroadh]

At the moment I'm not taking it as my RLS is fully controlled and my MS spasms are behaving.But when I take it, I use 0.2 or 0.3ml last thing at night. I use cannabis oil with 20% THC. I have also used the oil with 20% THC and 5% CBD.

[rmbroadh in reply to Joolsg]

Thanks,Joolsg

[Wanman4]

Hello, I’ve be taking Baclofen for over 4 years, I take it to manage my severe PLMD symptoms. As for RLS-Nothing, Have you tried adding Magnesium Glycinate to your routine? It acts like a muscle relaxer, but it not going to stop your RLS symptoms. Good Luck.

[MrVimes]

Thanks for your reply - yes I take Magnesium Glycinate every night.