Pramipexole reduction

[Robynasmith]

So I finally got to speak to a doc about my augmentation

I asked about gabapentin and he agreed that it would probably help however he told me that the “ vast amount of nasty side effects would probably outweigh the good “

Thoughts please

[Hidden]

Hi Robyn, as you probably know from your own experience that is rubbish!

Specifically if he was talking about pramipexole, since augmentation is a signficant worsening of RLS, how can something that makes RLS actually worse be simply just a "nasty side effect". The idea that something that's supposed to help you actually makes things worse is plainly illogical.

Your doctor is obviously ignorant of augmentation, which is not unusual. Personally, I have yet to meet a GP who has even heard of it. There's possibly no point simply telling them you have augmentation, they may not have a clue what you're talking about.

Augmentation is not listed as a side effect of pramipexole, it's a major complication.

If he's agreeable to prescribing gabapentin, then it's probably not worthwhile for you to argue with him.

However, a couple of things you need to be aware of.

One is that gabapentin takes a few weeks to work and it will not be particularly helpful while withdrawing from pramipexole.

Two is that he needs to prescribe an effective dose.

You may wish to try and edcuate this doctor about augmentation in which case you may find this link helpful

cks.nice.org.uk/topics/rest...

This is a link to the prescribing guidance for gabapentin

cks.nice.org.uk/topics/rest...

Both these links are to the National Institute for Health and Care Excellence's (NICE) Clinical Knowledge Summary (CKS) for restless legs. Which is specifically intended to guide GPs. Your GP may be able to deny being ignorant about RLS, but he can't dispute something that NICE publishes.

[RLSofManyYears]

Robyn

My experience with the Gabapentin patch was that it did not work for me. However I was then put on Pregabalin and that worked fine. I've now discovered that Pregabalin is now being classed as a "controlled drug" (bright orange stickers on the packaging) and so it might be harder to obtain.

The “ vast amount of nasty side effects would probably outweigh the good “ is a dreadful comment. The effects of augmentation have such a severe impact of the quality of life that DAs should not really be prescribed at all IMHO.

[Hidden]

I have been taking gabapentin for years and have not experienced any side effects what so ever. I take two capsules at 5 pm and two more at bed time. It’s not a cure but it definitely helps.

[involuntarydancer]

The side effects can be nasty and alpha2delta ligands don't work for everyone but how will you know whether the side effects outweigh the benefits if you don't try it? I wish some of these doctors could have a few nights with untreated rls - or worse - rls that has been augmented by their beloved dopamine agonists.

[Robynasmith in reply to involuntarydancer]

He has agreed that I need to come off of the pramipexole just doesn’t think gabapentin is the way to go He has upped my amitryptaline while I attempt to reduce

I know people’s opinions of amitryptaline on here but I have to say so far so good

I am down by a third so far with virtually no bad kick back

[involuntarydancer in reply to Robynasmith]

Well done on the reduction. Last time I came off pramipexole I went super slowly (10% reduction every 2 weeks - it was hard dividing those tiny pills) and had very few bad symptoms.

I have heard of one or two sufferers who found amitryptiline helpful even though generally it is an exacerbant. Also, there are lots of people for whom gabapentin/pregabalin are ineffective so maybe he’s not wrong.

Good luck, anyway. I hope you find an acceptable treatment.

[Robynasmith in reply to involuntarydancer]

I’ve done it very slowly I was on the max dose and have reduced by a sixth every four weeks

I am adding 10mg of amitryptaline each time I reduce

However I also take tramadol for another condition and upped that slightly as well

So far so good

I have had the first really restful sleep I have had in almost 15 years

[Robynasmith in reply to Robynasmith]

The dreams however are a whole different thing Weird in the extreme

[Joolsg in reply to Robynasmith]

You may not realise the amitriptyline is worsening your RLS if you’re suffering augmentation from pramipexole.

It may be that you will only realise once you’re off the pramipexole.

Or you could be the rare 1% who can take it without problems.

Gabapentin gave me quite a few side effects so I switched to pregabalin which had fewer, but as IV says, you won’t know until you try it.

[Herve]

Your GP may well be right in that there are side effects from taking Gabapentin. I wonder if your augmentation is a result of too high a dosage of dopamine agonist i.e. Pramipexole. My experience has been improved from taking a smaller dosage but spread out in divided doses from 4 pm through to 10 pm. For example I take 88mcg x 2 tablets at 4 pm and 88mcg at 10 pm. Alongside this, I also take Tramadol 50 mg x 2 at 10 pm and Clonazepam 500 mcg x 1 to 2 tabs at 10 pm. This guarantees a decent night sleep most nights of the week. However, no individual is the same and it is important to discuss all medications with your GP.

Hope This Helps

Pierre J. Hervé

[Norika1]

Hi Robyn. I did not feel great on Gabapentin. I take my pramipexole earlier these days and then what helps me finally sleep is Valdoxan. It is a melatonin antidepressant that seems to help me sleep. It works. I try to take less if possible. I tried cbd oil early last year and it seemed to also not work well for me. I seem to be opposite in my reactions to some things for some reason. Try gabapentin but I just don’t think there are miracle meds yet.