If I go through the hell of getting off pramipraxole then what? Is there something better to take?

[senders]

I really want off this medicine. I tried to quit before but the withdrawals were so bad I couldn’t stand it. Does anyone have any suggestions about what comes next if I am able to do this?

[Hoffie]

You should try to get a prescription for an opioid to get you through the withdrawals. I have taken all the DA’s, gabs, etc. Nothing works for me except opioids. My neurologist just gave me methadone 5mg and I only need one an hour or so before bedtime and I am sleeping the best I have in years. Good luck with finding the right medication for you

[Hidden]

Sorry to hear you're having such difficulty, it sounds like you're between the devil and the deep blue sea!

Firstly I wonder why you are trying to withdraw from Pramipexole, if it's working and side effects are tolerable then it might be best to stay with it.

It does seem however that there are several factors which affect the withdrawal process including, how long you've been taking Prami, what dose you're on, how fast you reduce it, what other medication you're taking, your iron store levels and whether you have any impulse control disorder due to the Prami.

If you are taking any other medicines which are known to exacerbate RLS then it will make it more difficult to withdraw. If your Ferritin level is low that will also make it difficult.

It sounds as if you need some other medication to help with the withdrawal. Quite a few members of this forum favour opiates either in the short term or as a longer term medication for RLS.

It just depends what the main withdrawal effects you experience are. If it's the RLS symptoms themselves then an opiate might help. If it's mainly insomnia a benzodiazepine might help.

When you do manage to wean off the Prami, an alternative, in the longer term, is an alpha2 delta ligand, Gabapentin or Pregabalin. These, unfortunately don't work for everyone and unlike Pramipexole, take a while to start working.

You will read on this forum that quite a few folk say that Gabapentin cannot work until all the Pramipexole is out of your system. I don't really know if that's true or not. I've certainly not come across any real evidence of it. I've also read some sources advising a combination of a dopamine agonist and Gabapentin. The reason I write this is because even if Gabapentin doesn't help you wean off Prami, you can take it at the same time, (I have been since last August) and as it takes weeks to start working, you won't have a gap between stopping getting Prami out of your system and the Gabapentin starting to work.

You never know, it might help you withdraw anyway.

[Parminter]

It may be difficult, or it may not.

LIke Hoffie, I now take low-dose methadone - 6mg per day.

I came off my dopamine agonist easily, after years of fearing that it was impossible. But it would have been impossible without methadone - I tried more than once.

[Gmc54]

If you're in the UK you will not be prescribed methadone. (As far as I’m aware) Maybe you could ask for Tramadol, that’s what I’m on now, and it takes the edge off, I also take various supplements. I still get bad nights, but for the most part I can just about stand the misery of rls. Make sure you aren’t having caffeine, or too much sugar.

[Lenilatt]

I went through the hell of augmentation about 18 months ago - I tried Kratom in its place which worked very well for about 9 months but it seemed that my body adjusted to it and it stopped being effective. However, RLS has been bearable since then, a few bad nights but on the whole, I sleep reasonably well now. In any case, much better than the last few years on pramipexole. (I had taken them for 15 years, gradually increasing the dose). So, in my view, it's worth going through it and see what's on the other side - there are things you can take and will, in any case, be better than staying on pramipexole. Good luck, it's not much fun going through it but I'm glad now that I did.

[Joolsg]

If you are in the UK, sadly you will not be prescribed methadone. The experts here seem to be about a decade behind the USA as they refuse to consider iron infusions or methadone despite both these options being cheaper than the alternative meds and more effective.

As others have advised above, there are meds that make withdrawal a little easier, like tramadol or oxycontin, but it is still hellish.

However, once off dopamine agonists, most people find the horrendous daytime jiggling disappears and the RLS reverts to hw it was pre pramipexole.

Pregablin has been shown to work more effectively than pramipexole in a 2015 study so that could be an option.