Meds for rls: Is there an alternative... - Restless Legs Syn...

Restless Legs Syndrome

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Meds for rls

moemill profile image
10 Replies

Is there an alternative to something safe then pramipexole or ropinirole for RLS ?

And do you have to wean off these drugs?

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moemill
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10 Replies

YES and YES

First yes -

The fairly well accepted alternative first line medications to the Dopamine Agonists (DAs) used for RLS, Pramipexole, Ropinirole or Rotigotine are the "Alpha2delta ligands" or "Gabapentinloids" Gabapentin or Pregabalin.

These are also used for other conditions including epilepsy and nerve pain. They can be effective for RLS, possibly not quite as immediately effective as the DAs and not everyone can tolerate some of the side effecst IF they occur. Gabapentinoids are less like to cause the same long term problems as DAs e.g. augmentation. They also have the advantage that they have very few interactions with other medications and are excreted through the kidneys rather than being metabolised and therefore place no stress on the liver.

Second yes -

DAs must be weaned off slowly, the slower the better and depending in what dose you take and how long you've been taking it. This is because of withdrawal symptoms which can be very severe. These include a worsening of RLS symptoms, insomnia and other additional symptoms.

Some people take an opioid to help them with withdrawals,

For severe RLS it is best to switch the DA for a Gabapentinoid rather than stopping everything.

You need to get as much information and advice about this as you can.

Barnaby97 profile image
Barnaby97 in reply to

Thanks Manerva for the info. I have been using a 3mg Neuopro patch for a couple of years with quite good results, but recently the effects are wearing off and for the last couple or more of nights my RLS has been severe (it's now 6am and I haven't been able to sleep).

I am intending to go to my doctor tomorrow and ask him to prescribe me gabapentin enacarbil. My question is how do I switch between the two medications?

in reply to Barnaby97

I don't think Gabapentin Enacarbil is available in the UK, the choices are Gabapentin or Pregabalin.

The links that Madlegs gives should be helpful. You need to reduce the dose of Neupro gradually i.e. by getting smaller dose patches 1mg. I have read that you can reduce the dose by 1mg every other day, but it sounds very fast to me and 1 mg is a relatively big reduction.

I've never used the patches myself, others on here may be able to advise you. I believe some people cut the patches in half so they can reduce by 0.5mg, but you need to check if that is safe.

There's quite a lot of information around about using an opiate to help get through withdrawal effects, but you will probably find that your doctor is reluctant to prescribe one.

Hopefully you have a good doctor, GPs generally GPs are quite ignorant about RLS. Good ones admit it!

You CAN start the gabapentinoid before stopping the Neupro, but it takes a few weeks to be effective so don't expect immediate effect. It's also said that it doesn't help with withdrawal.

macewan13 profile image
macewan13 in reply to

Yes, you can cut the patches.

Barnaby97 profile image
Barnaby97 in reply to

Doing my research on Gaberpentin, I came across another drug called Pregabalin which is in the same group but slightly different. It is also prescribed for RLS

Do you, or anybody reading this, know anything about this drug, and which one is better for RLS?

in reply to Barnaby97

Pregabalin is basically the same as Gabapentin,

The main difefrence is that Pregbalin is more "potent" than Gabapentin.

When taken orally Pregabalin is absorbed faster than Gabapentin. Time from ingestion to maximum plasma concentration for Gabapentin is 3 hours. For Pregabalin it's only 1 hour. More of Pregabalin is absorbed, it also more easily transported around the body.

The relationship between how much is taken and how much is used is different. With Gabapentin it varies from 80% of 100mg, to only 27% of 1600mg. In effect this means if you increase the dose by 16 times, you only actually get 7 times as much. With Pregabalin you get 90% of it across a broad range of doses. If you increase the dose 16 times you get 16 times the dose. Hence if you need a higher dose of Gabapentin, it's probably better to switch to Pregabalin.

The plasma concentration of Gabapentin is affected by food, with Pregabalin it isn't.

The half life of Gabapentin is more variable 5 to 7 hours (the speed at which the level falls) Pregabalin about 6.3 hours.

Both are mote or less used for the same conditions e.g. RLS, Pregablin in addition is also used for Fibromyalgia and diabetic neuropathy.

Some people that can't tolerate Gabapentin might better tolerate Pregabalin and vice versa.

Gabapentin is made in an extended (slow) release version which may be more suitable for RLS, but it isn't available in the UK.

moemill profile image
moemill in reply to

I have taken Gabapentin for nerve pain ,,don't like the side effects.. Then she tried prescribing for my RLS because Pramipexole didn't seem to be working..I refused to switch. I wished I never started taking these meds..sometimes it works and sometimes it don't and I already take 13 different meds for other health issues..And my Dr never tells me about the side effects..I end up researching myself.

in reply to moemill

A great shame that you can't tolerate the side effects of Gabapentin. Peoples reaction to Gabapentin varies so much.

I was on Pramipexole for nearly 10 years and not only did it lose its effectiveness it was making things worse. It has been such a relief to get off it.

You are right to not take something that causes you more problems than it solves, but that may apply to Pramipexole as well. The problem with Pramipexole is that it is truly wonderful at first, but then the consequences creep up on you and you lose perspective. You accept some of the symptoms as being a "normal part" of having RLS, when actually it's the Prami.

I write of insomnia. RLS used to prevent me from getting to sleep and Prami helped me get to sleep, but it wakes you up early, I mean 3 am early. Every night!

Which I'm afraid, leaves you between the devil and the deep blue sea, If you can't tolerate Gabapentin's side effects.

If you are however, on a cocktail.of medications then it may be that some of them are exacerbating your RLS and it may be that some of them are interacting.

I appreciate that doctors aren't always good at warning you about side effects. They are supposed to check if the medicines you're prescribed are interacting or not. They're also supposed to check contraindications. I suspect that sometimes, at least, they don't do those either.

You do have to do your own resesrch!

moemill profile image
moemill in reply to

You are so right,,,thats why I do my own research...sometimes I would rather just deal with RLS..I also take a Xanax to help me go to sleep but have vivid recurring nightmares that wake me up. Ty for you input !

Madlegs1 profile image
Madlegs1

All that Manerva has said.

Check info on

rlshelp.org

And

rls-uk.org

Both have all possible information required.

Plus read back through the posts on this inestimable site.

Cheers.

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