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[kleelibby]

Hello RLS friends, I’m Karen and new to this group. I’ve been following the posts and see many medications that are new to me. I’ve been taking pramipexole for years with occasional breakthrough. Has anyone taken this and had to change to another med? Thanks.

[Joolsg]

Welcome. Most people on here have taken either pramipexole or Ropinirole and most join because they started to suffer augmentation.

What you refer to as‘breakthrough’ may be augmentation.

Watch the video on the main RLS UK website and read the pinned post on Augmentation.

There are other drugs available- pregabalin and Gabapentin the most commonly prescribed after dopamine agonists have stopped working.

What dose are you on and how long have you been taking it?

[kleelibby in reply to Joolsg]

Thanks for your welcome. I think breakthrough is the same as augmentation. I take pramipexole 0.125mg for three years. I remember my mom getting up and pacing daily while hitting her thighs with fists when her RLS flared. Now I’m walking in her shoes! Gabapentin did not help much and my memory was a mess. I titrated off and my head feels clearer if that makes sense. I’m going to the UK website now. Thank you for such helpful info.

[Joolsg in reply to kleelibby]

Gabapentin wouldn’t help if you’re still on pramipexole. It works best if taken at night. Gabapentin wasn’t ideal for me but pregabalin was much better.

If you are suffering augmentation and want to get off pramipexole- read all the posts from the last few weeks. Lot’s of others going through the same thing.

Reduce very slowly.

[kleelibby in reply to Joolsg]

I didn’t know that. Why would my pcp prescribe pramipexole when I’ve been taking gabapentin for years? Sheesh!

[Joolsg in reply to kleelibby]

It depends why it was prescribed. It is used for nerve pain and anxiety as well as RLS. However, it doesn’t help RLS if you’re augmenting on pramipexole.

Sadly the vast majority of doctors and neurologists know very little about RLS or which drugs make it worse.

I presume you’re in the USA? There are knowledgeable doctors but you have to know where to find them.

[kleelibby in reply to Joolsg]

Gabapentin was prescribed for severe sciatica and it helped. Pramipexole is the first med I’ve taken for RLS.

[Joolsg in reply to kleelibby]

That makes sense. Pregabalin (Lyrica in USA) might help the RLS once off pramipexole as it has fewer side effects and is better absorbed.

Opioids are also very effective at low dose but difficult to get in the USA because of the over prescribing issue.

However, there are many physicians who are knowledgeable and understand their effectiveness at low dose.

Discuss fully with your doctors so you have a withdrawal plan and new meds plan.

Don’t accept another dopamine agonist as augmentation will happen very quickly again.

[Hidden]

Hi

I'm not quite clear what your situation is, please can you clarify?

It seems you were taking gabapentin for sciatica for years before starting on pramipexole. Is that right?

You say gabapentin didn't work for your RLS, do you mean that you had RLS before you started on pramipexole?

If that's the case then it seems that gabapentin may not work for you. It appears that it wasn't working when you weren't taking pramipexole and couldn't have been suffering augmentation. Augmentation is not the reason for it not working.

As regards the pramipexole you've been taking this 3 years on the lowest dose 0.125mg and you're experiencing "breakthrough".

If you've now read more about augmentation you might see that your breakthrough isn't necessarily the same as augmentation. If by breakthrough you mean that you usually don't have symptoms, but sometimes at night you do, this in itself is not augmentation.

The occurrence of augmentation varies but some figures suggest that 32% of users experience augmentation after taking it 3 years, 60% after 8 to 10 years. The chances of it occurring increase with higher doses.

In comparison, I was taking pramipexole for at least 5 - 6 years before augmentation became significant but I was taking six times your dose i.e. 0.75mg.

However, loss of efficacy is also a complication of pramipexole and that is what you're more likely to be experiencing. The pramipexole simply isn't working as well as it used to. In many cases doctors increase the dose and this might help for a while, but does increase the risk of augmentation.

It seems a good idea then as Jools suggest to start taking pregabalin now, to see if it works especially if you don't yet have augmentation.

In summary

As I understand it you had RLS for many years before starting pramipexole during which time you were taking gabapentin and it didn't work for your RLS. It isn't therefore an alternative for you.

You are currently finding that the pramipexole is beginning to fail, but don't appear to be yet suffering augmentation.

This then is a good time for you to try pregabalin. This can work in combination with pramipexole but not if you are suffering augmentation.

If it works then you will know that it's OK for you and then, if necessary, you can reduce and stop the pramipexole.

[kleelibby in reply to Hidden]

Thank you so much for the information. Sorry if I was vague. I’ve been on gabapentin for several years for acute sciatica. I started low dose pramipexole less than a year ago for RLS. Once sciatica was more manageable I started cutting back gabapentin, it was affecting my memory. I know my pcp from the hospital and she tends to ask me on my visits what I think should be prescribed! Hey you’re the doc!

[Hidden in reply to kleelibby]

Hi, thanks for clarifying.

I'm trying to work out if the gabapentin will work for your RLS or not.

If you were taking gabapentin before you started pramipexole, but despite this you were still experiencing RLS symptoms, then unless you weren't taking enough it seems gabapentin doesn't work for you.

This seems to be the case since firstly, the dose for nerve pain is as much or even more than for RLS. Secondly, if the gabapentin was working for your RLS then presumably you wouldn't have needed to start pramipexole.

Since you've only been taking 0.125mg pramipexole for one year, although it is possible it's actually unlikely you have augmentation.

Pregabalin can work sometimes when gabapentin doesn't and this may be due to it being more potent and more easily absorbed. Unfortunately, it works in the same way and has more or less the same side effects. So if gabapentin doesn't suit you, then pregabalin might not.

Note that if you're still taking gabapentin you can't ADD pregabalin, you will have to stop taking gabapentin one day and start taking an equivalent dose of pregabalin the next.

[kleelibby in reply to Hidden]

Thanks Manerva. I understand what you’re saying, it makes sense. Not one of my physicians has ever mentioned a drug interaction, and I’ve found several. I think my pcp has become complacent, I’ve been a patient of hers for so long. I notice a real difference in attitude since covid.

[Hidden in reply to kleelibby]

Gabapentin doesn't interact with pramipexole, nor does pregabalin.

Gabapentin and pregabalin don't "interact" either, but if you take both at the same time you are in effect doubling the dose.

[Hidden]

PS

People prescribed medication for RLS, which works, as pramipexole does at first , often don't get proper advice about the "non-pharmacological" management of RLS. It's as if, once you've started on medication then other things become irrelevant.

This is what happened with me and I assume a lot of other people., but it's not irrelevant.

Assuming this is what you've experienced then it might be worth telling you that the first "treatment" that should be tried for RLS is iron therapy. It's probably because iron therapy isn't guaranteed to be successful and also because it has no immediate effect that when RLS is severe then the immediate relief given by medication is preferrable.

However, this shouldn't exclude iron therapy altogether.

Many doctors when diagnosing RLS do blood tests for iron deficiency but it appears that in many cases they don't understand the signficance of the results. Since iron deficiency anaemia is a known cause of "secondary" RLS, if blood tests show there is NO anaemia then doctors disregard the need for iron therapy.

However, brain iron deficiency is a causative factor in "primary" RLS and correcting this deficiency can be successful in treating RLS in between 50 and 60% of cases (depending on the therapy).

Here's some more information in this.

sciencedirect.com/science/a...

The other thing that is often overlooked is if there are any aggravating factors making RLS worse.

There are many medications that can make RLS worse if you are taking any for any other reason.

Thdere may also be dietary factors in RLS. Definitely alcohol and added sugar should be avoided but some people find various diets helpful. It's worth keeping a food diary of what you eat each day and what your symptoms are like that day or the day after.

[Graham3196]

I have sent some info in a private message.