Why is RLS affecting my arms for the first time now that I’m off pramipexole?

[rlsagain]

I finally weaned off pramipexole 19 days ago and for the past three nights not only have my legs been jumping nineteen to the dozen as they’ve always done, but my arms have too! This never happened when I was taking pramipexole so I wonder if anyone can tell me why it’s happening now? I’m taking 300 mg gabapentin at around 7pm, 600 mg gabapentin and 100mg tramadol around 10 pm, and 28 mg iron bisglycinate ( gentle iron) with orange juice on an empty stomach just before bed at around 10.30 pm. I take 250 mg magnesium during the afternoon with a cup of decaffeinated tea. Last night I was so desperate for sleep that at 3.30 am I took 2mg diazepam (I have a few left prescribed for a chronic back pain condition last year), and was able to grab nearly three hours sleep before my legs and arms woke me again at about 7.30 this morning. I really thought by now my RLS would be easing, not extending to my arms as well. Am I augmenting on gabapentin?

There’s no point me asking any of the GPs at my surgery as they think I should stay on the pramipexole I was prescribed by the neurologist at Guys I saw last year (or rotigitone, which I refused to even try). The gabapentin and tramadol were prescribed for my back pain and it was only by reading this forum I discovered they could help with RLS- no doctor ever told me this🙄.

Any thoughts welcome, please. Many thanks.

[SueJohnson]

Congratulations on getting off pramipexole. I know that was not easy, You can't augment on gabapentin. I would move the 300 mg of gabapentin you are taking at 7:00 to 8:00 pm and if that doesn't work keep adding 100 mg of gabapentin every couple of days until you find a dose that controls your symptoms. As I mentioned before according to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily."

[Joolsg]

Were you augmenting on Pramipexole?You have only been off it for 19 days and withdrawal can last months.

Tramadol is the only opioid that can cause augmentation and so doesn't always help.

After dopamine agonists, pregabalin and gabapentin often do not help either as your dopamine receptors may be permanently damaged.

I suggest you switch to codeine and increase the gabapentin to 1200 taken in 2x600mg doses.

But, it's very early days- most people take months to find the right combination of meds after dopamine agonists.

[rlsagain in reply to Joolsg]

Thank you Sue and Jules for your prompt replies. I knew it would take a while to withdraw - as you say, it’s only 19 days so far - but what I can’t understand, and am finding extra hard to put up with, is the twitchy arms I’ve had for the past three nights. I never had this when I was on pramipexole, so I’m wondering why it’s spread to my arms now I’m off it? Jumping legs are bad enough, without having to cope with other limbs misbehaving!

I’ll try changing the timing of the first gabapentin tonight Sue, as you suggest, but I can’t tolerate codeine unfortunately, Jules, and may have to delve into my diminishing supply of diazepam again if it’s too bad.

Thanks again for your support. I’ll keep you posted🤞

[Joolsg in reply to rlsagain]

If codeine isn't possible, ask for low dose Oxycontin or Targinact. It's the most commonly used opioid after tramadol and doesn't cause augmentation of RLS symptoms like tramadol.It really is trial and error for the 12 months after getting off Pramipexole.

Some people do very well in gabapentin or pregabalin or tramadol or Oxycontin or a combination.

It took me over 5 years to find a solution and I really had to push/beg to get Buprenorphine prescribed.

Hopefully it will settle & increasing gabapentin to 1200mg will work.

[MumofSam in reply to rlsagain]

The same thing happened to me as I was weaning off Pregabalin and Tramadol. I’d only ever had RLS in my legs, and I then found I was getting it in my left arm, base of my spine and my neck. I stayed meds free for about 9 months with no improvement. Couldn’t sleep properly either. In the end I went back on Pregabalin which helped for a while then stopped. I upped the dose but that stopped working too. So now I’m taking nothing, which can be tough but it’s no worse than it was when talking Pregabalin. I think Tramadol caused permanent damage to my dopamine receptors.

[ookla]

I recommend holding back that tramadol dose until you start getting the symptoms in your arms. When the arm symptoms start, THEN take the tramadol and wait 15 minutes before laying back down for sleep. I've found tramadol, in my case, doesn't work pre-emptively. If I take it before my symptoms start, it does nothing - but if I take it after my symptoms start, it knocks them out after around 15 minutes and then I can lay back down and sleep through the night.

[rlsagain in reply to ookla]

Thanks, ookla , I’ll definitely try that. For the chance of sleeping through the night I’ll do anything ! I’ll keep you posted .

[Birdland]

I don’t have too much to add except that for 5 weeks after my last dose of Ropinirole my symptoms were at their worst. So it doesn’t sound unusual to me. After the 5 weeks I progressively felt better. My view on it is that your brain and body are trying to force you into giving them what they want. More DA’s!

[Bganim1947]

I had to titrate off Ropinerol a dopamine agonist because I read experiencing several augmentation. When I finally got off it, I went through withdrawal and had the same thing happen—my RLS went up into my toro so and down through my arms.

My heart goes out to you. It’s torcher I know. But the good news is it will calm down & then end. My pharmacist suggested 100 mgs of Tramadol 3x/day and the same dosage of Pregabalin because my GP knew nothing about RLS. Med schools have got to start training docs to deal with this. That aside, once my body acclimated to the Tramadol & Pregabalin doses, about a week, my body calmed down. It took a few weeks after that and i had few episodes of RLS again, except when I would forget to take my medication and then this last year after knee replacement surgery when I had to be off my Tramadol for 20 days while I was on Oxycodone.

I know others say Tramadol & Pregabalin don’t work that well, but you have to try different things to see what works for you. Try speaking with your pharmacist, they know much more than most doctors about medications. Best wishes. Bganim