Medication: has anyone tried... - Restless Legs Syn...

Restless Legs Syndrome

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Medication

Conifer
Conifer

has anyone tried Pramipexole for restless legs ?

28 Replies
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Lots of people have and regretted it

I will write more later.

In the meantime I suggest you read the NICE guidelines for the management of RLS

cks.nice.org.uk/restless-le...

In explanation of my earlier reply.

I am assuming as you've asked this then you. or someone you know has been diagnosed with RLS and pramipexole has either been prescribed or suggested. If that's not the case then apologies if my comments aren't relevant.

I will try and explain the key points of the guidelines which I've provided a link to and will add further information from other sources.

NICE is an acronym for the UK National Institute for Health and Care Excellence which is an organisation which has several functions. One of those functions is to publish guidelines to doctors on how to manage various health conditions. These guidlines are based on the latest evidence available at time of publication.

The current guidelines were published in 2016 and are due to be reviewed and updated this year. Further evidence about the treatment of RLS has been published since 2016.

NICE is also responsible for publishing prescribing guidelines for medications licensed for use in the UK ib the form of the British National Formulary, (BNF).

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I believe that UK NHS doctors are not legally bound to adhere to the guidelines, however, should they not do something that the guidelines suggest OR do something that the guidelines state shouldn't be done, and the patient should come to harm, then that doctor could be accused of medical negligence.

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In the NICE guidelines ubder the headiing "What drugs should I consider to treat restless legs syndrome?" you will read that two classes of medicine are recommended for treating RLS

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1 Dopamine agonists, i.e. pramipexole, ropinirole or rotigotine.

2 Alpha 2 delta ligands, gabpentin or pregabalin

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Underneath that you will see the sub-heading "Before commencing drug treatment, ensure the person is aware:"

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"Of possible treatment complications. In particular, augmentation, loss of efficacy, and the risk of impulse control disorders (ICDs)."

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This applies to the dopamine agonists only, NOT gabapentin or pregabalin.

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As extra information - whereas ICDs are not that common augmentation and loss of efficacy are very common. Furthermore, of the 3 DAs, pramipexole has the highest risk of causing augmentation.

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Extra information - more erecent sources and recommendations state thast the first medication to be tried for RLS is gabapentin or pregabalin and DAs should be avoided altogether if possible, because of the high risk if augmentation.

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My suggestion is that if you or a peson you're thinking of has not yet started taking pramipexole - do NOT. Go back to the prescribing doctor and request either gabapentin or pregabalin instead. If the dr should question this, then you can state it is a recommended alternative and DAs cause augmentation.

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The NICE guidleines support this and you can refer the doctor to them, they can NOT dispute this.

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If the pramipexole has been started, then hopefully the starting dose is ONE tablet identified as either 0.125mg pramipexole dihydrochloride or 0.088mg pramipexole.

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If this dose works, do NOT increase it, even if the dr says you can. If it doesn't work OR if it does, then some time later it fails, then the dose could be increased to 2 tablets. I suggest you never ever increase the dose to more than 2 tablets, even if the dr suggests it. This signficantly increases the risk of augmentation occurring. If this happens ask for further advice.

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The NICE guidelines state

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"Drug dosages should be kept to the minimum required to ease symptoms as the higher the dose, the greater the risk of augmentation"

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This ONLY applies to DAs, gabapentin or pregabalin do NOT casue augmentation.

Theoretically, if a doctor prescribes you pramipexole and doesn't warn you about augmentation or ICDs and you subsequently suffer one of these, then they have been negligent.

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A BIG HOWEVER

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Medication isn't the first or only thing that should be considered. Before prescribing a medication or as well as the doctor should consider two other things at least.

The first is to carry out some blood tests for iron deficiency.

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The NICE guidline state under the heading "Address any underlying cause etc" -

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If there is

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"Iron deficiency anaemia, or if serum ferritin is less than 50 micrograms/L - - - prescribe iron supplements"

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Extra information - the tests should include serum iron, tranferrin, ferritin and haemoglobin.

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A low haemogolbin indicates iron deficiency anaemia. EVEN if there is no aneamia, 50% of people with RLS can benefit to raising their ferritin to at least 100ug/L

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Also, a prescription iron supplement is not necessary and may not help. ""Gentle iron" is better and should be taken only every two days, not every day and should be taken on an empty stomach with a glass of orange. Otherwise, it may not be absorbed.

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The second is to identify if there any "aggravating factors" or "triggers" making the symptoms worse.

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The NICE guidline state

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"If an existing drug may be precipitating or exacerbating symptoms, consider if changing or stopping it is an option."

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There is a long list of medications that can make RLS worse and in some cases cause it. Too long to write here,. If you wish, name all other medications you take regularly or occasionally and I can say if they are on the list.

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Food and drink can also trigger RLS, - common ones include alcohol and added sugar, refined carbohydrates e.g. white bread and some food additives.

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Anything that might cause inflammation may make RLS worse e.g. if you're gluten or lactose intolerant. An anti-inflammatory diet can help.

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In answer to your question, pramipexole is the very last thing anybody should consider when first diagnosed with RLS. Correcting underlying causes and avoiding aggravating factors are the first steps. If a medication is needed then gabapentin or pregabalin should be tried.

Suzjam
Suzjam in reply to Manerva

I am on pramipexole I am on 350mg (1xday) it helps some days

WideBody
WideBody in reply to Suzjam

Shouldn’t pramipexole work or not work? Not “some days”.

Disclosure: I took pramipexole and deeply regretted it.

Suzjam
Suzjam in reply to WideBody

I know what u r saying, it should work or not, but it doesn’t, some days it works, and some days it do my head in, Why did u regret it? What am i looking for? I don’t know if the tablets are good or bad now I am seeing all these reports .

WideBody
WideBody in reply to Suzjam

Did your Doctor do a morning fasted full iron panel? Did you try Gabapentin first?

I am not as eloquent as Manerva, read his answer.

Just don’t increase your dosage of pramipexole, it can cause augmentation and personality changes. If you don’t know what augmentation is, it should be a required lecture prior to taking pramipexole.

Suzjam
Suzjam in reply to WideBody

No straight on the pramipexole, and doctor just said it can cause compulsive buying

WideBody
WideBody in reply to Suzjam

More than compulsive buying, if you have a significant other, they should be watching for behavior changes. It made me irritable and angry, when I abruptly stopped, I withdrew from the world.

Just be careful, and do the basic bloodwork first. I was iron deficient without anemia. Fixing my iron helped a lot. Better than the pramipexole ever did.

Suzjam
Suzjam in reply to WideBody

Ok thank you

Manerva
Manerva in reply to WideBody

An interesting observation, some people do experience RLS like that. I would have thought that if somebody's taking pramipexole then it will fairly consistently work or not work.

It might be duse to some other factor, e.g. if you get blind drunk every other day. that clould account for it, sugar binges etc.

I recently read another member posting that they apparently randomly took between two and 5 tablets a day and sometimes didn't take any for two days at a time and never had a problem with this, had been doing it for 20 years and was considering going cold turkey despite all warnings.

If I ever missed a dose of pramipexole I'd have major twitching within hours which would last 6 hours or more.

I realise that there are differences between peoople but I suspect some "people" are so outside the parameters of what's "normal" or "usual", that they're aliens or "bots". (I don't include Suzjam).

Perhaps it's an attempt by "foreign" governments to destabilise democratic societies by disseminating misinformation about RLS.

Perhaps I have an overactive imagination.

Manerva
Manerva in reply to Suzjam

I think you mean 0.35mg a day or 350 micrograms, 350mg is over 460 times the maximum dose!

Nonetheless, this is still perhaps a little bit too high to minimise long term complications.

If it doesn't work every day and yoiu're tempted to increase the dose, I would suggest you don't.

If you're not happy with your current symptoms there are quite a few things you can do.

E,G. you could read about the role of iron in RLS and you could also read about aggravating factors. You could ask your doctor to prescribe gabapentin as well as pramipexole.

However if you've noticed over time that -

- Your symptoms are getting more intense or more often

- They have spread from your legs to other parts of the body.

- They have started happening earlier in the day

- They start occurring quicker after relaxing than they used to

then I'm afraid the pramjpexole may be reaching the end of its usefulness for you.

Suzjam
Suzjam in reply to Manerva

Hi, yes it is 0.35mg sorry, thanks for your advice, yes my legs start a lot earlier now, sometimes I can only sit down a very short while and they start up.

Manerva
Manerva in reply to Suzjam

Sorry, that sounds like "augmentation".

here's a link

sleepreviewmag.com/uncatego...

you might also find reading this post helpful

healthunlocked.com/rlsuk/po...

Suzjam
Suzjam in reply to Manerva

Thank you,

Yes I have. It works best for me.

Please listen to Manerva. I took it and yes it worked quite well for awhile. Then it didn't help any more and getting it back under control was extremely difficult. Also, the ICD it brought on was no joke and nearly destroyed me. I wish I had never taken it.

I take both gabapentin and a low dose of pramipexole. The gabapentin works well for rls and pramipexole is the only med that controls the plmd.

I am aware of possible augmentation but for the moment it is such a relief to have found something that works.

Manerva
Manerva in reply to Lunawildwolf

Hi yes, DAs do have an advantage over gabas for PLMD. Just keep the dose as low as possible.

Yes I take these on a daily basis .I'm on 5 a day .

Joolsg
Joolsg in reply to Cantcope53

You do know the maximum dose is one tablet? Please read all the posts on augmentation and all posts and replies by Manerva.

Manerva
Manerva in reply to Cantcope53

How long have you been taking 5 tablets?

Were you once taking less, then found you had to increase the dose?

5 of the lowest dose tablets i.e. 0.125mg, puts you at high risk of suffering complications, which your prescribing doctor should have warned you about.

I'm sorry if they didn't, this is irrsponsible.

Cantcope53
Cantcope53 in reply to Manerva

Over the last year or so ,I started at one and have got to 5 in the last two months ,the dose is 0.088mg

Manerva
Manerva in reply to Cantcope53

Hi, although 5 times 88ug id still just below the "official" maximum, which is 6, it is a high dose. As it appears that you've had to increasr it, that's not a good sign.

Did you increase the dose because it wasn't working as well? What are your symptoms like now?

I am on premipoxle but it’s not helping me now I think those tablets are making my condition worse now how to come off those I have ask doc scared to try

Joolsg
Joolsg in reply to Ranjits

Read all the posts on Augmentation and all Manerva's replies to recent posts. He sets out everything you need to know about pramipexole. His response above is your starting point.

Manerva
Manerva in reply to Ranjits

Go for it Ranjits, for me the thought of ever suffering augmentation again is much more scary than having to go through withdrawing from pramipexole.

You can see your question has caused quite a debate.

I hope you can make sense of it.

On the one hand you'll see some brief responses supporting the use of pramipexole, it seems from people who've never experienced any problem.

On the other hand you'll see perhaps longer responses from people who had problems with pramipexole, forewarning you of potential problems.

Who's right or wrong isn't a matter of individual experiences, it's a matter of probability.

There is statistical evidence stating the probability of suffering complications from taking pramipexole is quite high. There is no evidence to suggest that anybody will never have any problem.

Since those supporting the use of pramipexole appear to have never tried an alternative, they can't even offer an opinion on how alternatives compare.

It is your choice, you have to weigh up if you want to take the risks inherent in taking pramipexole or whether it's worthwhile exploring alternatives first. These aren't without problems either.

That's your choice and those who by implication are apparently urging you to take pramipexole aren't suggesting any alternative.

thanks so much i will let you know how i get on just had it delivered so will try tonight

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