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Restless Legs Syndrome

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Changing medication

Ex-rugbyplayer profile image
10 Replies

Starting on Monday to change my medication. Reducing my pramipexole by .26 for a week then another.26 for a second week then another.26 for a third week leaving me on 1.05.

I’m starting on Monday 100mg Gabapentin increasing to 200 mg the next week and finally increasing to 300 the third week.

Not sure what to expect but pharmacy told me I was going in the right direction to reduce my pramipexole intake.

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10 Replies
Madlegs1 profile image
Madlegs1

That's a fairly savage run!Good luck, but don't be disappointed if you run into a bit of a rough maul on the way down the pitch!

Personally, I would be expecting to take at least 6 months to taper down from that high initial dose.

Good luck.

Ps- Prami comes in 0.088 pills. I'd be inclined to use these as the steps.

All the best.

LotteM profile image
LotteM in reply to Madlegs1

I second Madlegs. See how it goes, but maybe you want to prepare yourself to go much slower. If the prami pills are NOT extended release, you can cut them.

Also, get your blood tested fore iron, a full panel including ferritin and transferrin saturation. If ferritin is below 100 (or even 200) and transferrin saturation below 45%, you can supplement with iron. We here like iron bislglycinate. And taking it just before bed (empty stomach) once every other day raises it not slower that taking it every day or 3x daily. But if you feel immediate benefit from taking iron, do take it daily.

Ex-rugbyplayer profile image
Ex-rugbyplayer in reply to Madlegs1

Thanks for your input, not looking forward to starting. Probably the fear of what could happen.

SueJohnson profile image
SueJohnson

Once you are off pramipexole for several weeks increase it by 100 mg every couple of days until you find the dose that works for you. take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily."

Ex-rugbyplayer profile image
Ex-rugbyplayer in reply to SueJohnson

Hi, thanks for replying. I spoke to my doc and he described gabapentin as a dirty drug but it’s going the way to reduce my intake of pramipexole

Moonwalker1967 profile image
Moonwalker1967

I am weaning off Pramipexole too. If you do it quickly expect very little sleep and kicking all night. My legs and knees even started hurting with all the kicking. Ouch!!! I go to bed early and try to get to sleep, full of hope and bang ...there it is. I am sorry to say I walk to my kitchen and eat in the middle of the night. Putting on weight too. It does get my mind off it though.On a good note, my fitness tracker is showing many steps at nighttime as I am constantly moving :)

Good luck! It's not easy!

Ex-rugbyplayer profile image
Ex-rugbyplayer in reply to Moonwalker1967

Hi Moonwalker1967. It’s good of you to give me an insight of what’s ahead. My doc tells me everyone is different and can have different degrees of “pain”. I’ll keep posting and I hope you can get off Pramipexole and your suffering eases soon.

rlsagain profile image
rlsagain

I too am trying to wean off pramipexole. Based on reading loads of online articles and advice from forum members, I started four nights ago, changing from prolonged release 0.26 mg per night to ordinary pramipexole 0.088mg, plus my usual 300 mg gabapentin and 50 mg tramadol (taken for a separate condition of chronic back pain, which coincidentally I discovered to be something prescribed for RLS, although no medical person has told me this, only what I’ve read on here). My aim is to cut the tablets in half in two to three weeks, then again in a few more until I’m off the drug completely.

Sorry not to be the bearer of bad news, Ex-rugby player, but it’s been awful! I’ve woken each night around 2am, unable to keep still, and am SO TIRED. This morning my legs didn’t stop moving until 8am, something that’s never happened before. However, I will persevere, as I’m determined to get off the wretched pramipexole.

Getting a gp appointment at the moment for an NHS non essential blood test is like finding hens’ teeth, so I’m amassing as much evidence from all these papers mentioned in the forum to present to him when I finally manage to speak to him, and hopefully actually SEE him, but as so many studies are US based, I’m not sure how much notice he’ll take. This sounds defeatist, maybe, but realistic. I saw a neurologist at Guy’s a year or so back who told me to stop the ordinary pramipexole and prescribed the prolonged release version and if that failed, to use rotigitone patches, something I didn’t do as I didn’t want the side effects and have sensitive skin. Having read so much on here since then, I realise she was out of date in her prescribing, so don’t have a lot of faith in experts, I’m afraid.

Good luck on Monday with your new regime and let me know how you get on. I’m rooting for you!

Ex-rugbyplayer profile image
Ex-rugbyplayer in reply to rlsagain

Hi, I know the next few weeks are going to be tough, coming off a big dose won’t be easy, thank you for your good wishes and I hope you manage to get off Pramipexole. I’ll keep in touch and let you know how I’m coping.

rlsagain profile image
rlsagain

Meant to say, sorry to be the bearer of bad news - the ‘not’ slipped in🙄

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