Does it really get better after Pramipexole?

[Ananda00]

Hello Everyone. My husband experiences RLS, since he was 13. For many years he was untreated, but around the time of university it got bad -- so he went to a neurologist and was put on DA's. For the first couple years, he was on something he can't remember, but then got switched to Pramipexole. He estimates he was taking Prami for about 17 years. When I met him four years ago, he was taking 1.5 mg and was having augmentation. Some nights he took extra Prami . The restlessness had spread to his arms, he was not sleeping every night -- and he had to rely on a once-a-week dose of Tramadol to lie completely still for awhile. About 18 months ago, he began tapering off of the pramipexole. It was hell. Electric shocking pain all over his body. He tried to get off of it completely 6 times but each time he had to go up to a 1/2 pill. I believe he has PTSD from these experiences. He was of course given EVERYTHING else - Lyrica, Gabapentin, benzos, Oxy, anti-depressants (he didn't try these) - nothing worked successfully. During his first attempt off of prami, he took Benzos, and he still couldn't sleep -- had to stand and he falling down all the time. I was horrified.

The one thing he has had success with is Kratom -- but he has to take multiple does a night. And just by itself (not combined with other stuff) it doesn't work reliably. He also smokes a joint -- this helps him fall asleep but not stay asleep.

So, just two weeks ago he went to a methadone clinic here in Germany. He slept for 10 nights in a row! He got off the prami totally. He resolved never to take it again. Unfortunately in Germany, they don't prescribe methadone. You are basically put in a database and labeled a junkie for life here. You have to go to a clinic to get it every night. Many of the neurologists we saw (and then fired) here didn't know about augmentation or the problems with long-term use of DA's.!!?? I was really surprised...because, well, it's Germany.

Today has been two weeks since he stopped the Prami. He took Oxycodone last night. He managed to fall asleep early this morning for three hours ! That is a miracle considering....Does anyone know, is there any chance he will finish the withdrawal? To those of you who've done it, does it get better? How long does it take?

Thank you.

[Hidden]

I'm quite sad to read this. Doctors ignorance of RLS is international.

1.5mg pramipexole is TWICE the recommended maximum daily dose, so augmentation was inevitable.

I note you say he stopped pramipexole two weeks ago. I presume he was taking half a tablet before that. Not sure if it was an 0.25mg tab or a 0.125mg tab. If the former a bit too much of a reduction at one go.

Normally withdrawal effects can last about 2 weeks after stopping, but if someone has been taking the DA for years then it can be longer.

Augmentation is unlikely to recur unless he starts taking a DA again. Unfortunately, long term use of DAs can lead to permanent damage. Certainly anybody whose ever suffered augmentation is more prone to it thereafter.

Pregabalin or gabapentin are the standard alternatives to the DAs, however these aren't particularly helpful whilst suffering augmentation or DA withdrawal effects. They have to be continued for some while after stopping the DA.

In addition there has to be a sufficient dose.

The recommended maximum daily doses for RLS in the UK are 450mg for pregabalin and 2700mg for gabapentin. In practice if you need more than 1200mg gabapentin it's better to switch to pregabalin.

Oxycodone should help with withdrawal effects and can help RLS longer term. Certainly opioids are recommended if first line treatments have failed. Oxycodone is licensed for RLS here. An increasingly popular opioid for RLS is low dose buprenorphine.

THere is a good chance he will finish with withdrawal, it may take a bit longer.

I hope this helps, tell him to stick in there and do NOT start taking pramipexole again.

[Joolsg]

Withdrawal usually lasts around 2- 3 weeks but he will still need meds to control this disease.It took me about 6 months to find the best combination of meds to control my RLS.

He should ensure his serum iron is above 60 & serum ferritin above 100, preferably 250. Doctors know nothing about this disease or how to treat it properly.

Methadone and buprenorphine are clearly highly effective and cheap!

We will need to keep shouting & screaming & campaigning until we are heard. The UK is just as bad as Germany.

[RLSofManyYears]

I'm sorry to hear of how things have gone for you both. I too have suffered withdrawal from DAs (ropinirole and pramipexole) with the effects of augmentation. My consultant neurologist simply kept on upping the dose! I finally managed to ramp down my pramipexole but then was in the situation of sleepless nights. However, after I had read about Temgesic (buprenorphine) I managed to get a prescription from my GP and it has made such a difference to my life - I now sleep through most nights and the RLS symptoms are very few now. I do not know if you can get buprenorphine in Germany but if you search this site for buprenorphine then you will find links to useful medical articles/people concerning buprenorphine.Auf Wiedersehen

[Faithatthebeach]

I may have answered this before but don't see my post. I wish there was another way, but there's not. I've tried all nerve drugs, acupuncture, exercise, etc for the last 7 yrs and OxyContin/oxycodone or another opioids are the only remedy for my RLS and restless body syndrome, which is a part of my total diabetic neuropathy. Opioids effect the dopamine your body produces in response to pain. Opioids go directly to the nerves to calm them down.