Augmentation percentage

[rkatt]

I’ve been reading the NICE guidelines. They quote studies that show a very low percent of augmentation among RLS sufferers using DAs. This would suggest RLS is easily treated and no big deal. So are we, those who have experienced augmentation, a tiny group of pathetic medical losers and moaners? I augmented after one year. Am I a freak? Or are the figures in NICE inaccurate? Are there more reliable studies?

[Hidden]

The figures stated by NICE might be a little bit misleading.

The figure for rotigotine is a 5% in 5 years. Rotigoitne is the least likely to cause augmentation.

The figure for ropinirole is 6.5% after 5.5 years

For pramipexole the figure at 0.5mg is 7.7% and at 0.25mg is 5.3% in ONE year.

The 10 year study for pramipexole stated 7% per year i.e. 70% in 10 years.

I have read similar figure elsewhere.

They seem to suggest that the risk is greater the dose and the longer the time it's taken. This is particularly true of pramipexole.

However the IRLSSG, EURLSSG and RLS-foundation 2016 Guidelines for the first-line treatment of restless legs syndrome

state

"As a means to prevent augmentation, medications such as α2δ ligands may be considered for initial RLS/WED treatment; these drugs are effective and have little risk of augmentation."

"the physician should be aware that even low dose dopaminergics can cause augmentation."

[HilsK in reply to Hidden]

As of of October 2020, dopaminergics have been withdrawn as front line drugs in the States and Canada for RLS. I was informed of this at American RLS Foundation Conference two weeks ago. So why are they still being used as such in the UK?

[ACRELANE in reply to Hidden]

What can be used that isn't a dopamine. I am trying to come off Pramipexol very slowly but even stopping half a tablet is proving difficult.

[Hidden in reply to ACRELANE]

As soon as you cut the dose, e.g. as you say even by a half tablet less, then you will get withdrawal effects. These affect people differently but are usually a worsening of symptoms. These should be temporary and subside after maybe a couple of weeks.

The standard replacement for dopamine agonists is either pregabalin or gabapentin. You can start taking one of these whilst still reducing the pramipexole.

These however may not counteract withdrawals and it's worth asking your doctor to prescribe an opioid such as codeine or tramadol, temporarily to help with withdrawals.

Another option is to replace the pramipexole with a low dose of a more potent opioid. It is recognised that this is an option when dopaminergic drugs have failed.

You may have to see a neurologist for this, but I know that some people have managed to persuade their doctor to prescribe low dose buprenorphine. This is known as temgesic in the UK. THis would both help with wothdrawals and replace the agonist.

[puzzler1 in reply to ACRELANE]

Try asking for Temgesic 200mcg. I think this will be the first drug of choice in the future.

Have a look at Shumbah's and my posts and replies. There's quite of a lot of discussion about it recently.

Good luck and hope you find some relief soon.

[mmb8083 in reply to Hidden]

I thought augmentation rates were much much higher than you listed

[Hidden in reply to mmb8083]

They probably are. These are just what NICE listed

[Joolsg]

Interesting - I’ve listened to quite a few webcasts run by the US RLS foundation & Dr Buchfuhrer & Dr Winkleman ( both of whom deal with thousands of RLS patients ) talk of much higher percentages. According to Dr B there is a 10% rate of Augmentation per year and the longer you’ve been on DAs, the higher the percentage- rising to 80-90% of patients suffering augmentation after 8/9 years .

That’s certainly backed up by what we’re seeing on here. Every day we’re seeing at least one or two suffering augmentation. Expand that by the number of help forums out there and Hey Presto, a very high rate of Augmentation. We all need to report Augmentation on the UK Yellow Card Scheme or the authorities will have no idea how many of us have been through it.

[HilsK in reply to Joolsg]

YES YES YES .. lets get that Yellow Card Scheme active ....

Yes, the webinars/ webcasts of these committed scientists Dr Buchfuhrer & Dr Winkleman and information they gave at the the USA RLS conference two weeks ago referred to studies which are now available as based on the 20 year + prescribing of dopinergics as front line drugs for the treatment of RLS. .. Also the recent survey the RLSF (the American RLS charitable foundation) have conducted also seeks to correct and update these grossly misguided figures and much more.

[puzzler1 in reply to Joolsg]

Interesting. What's the yellow card scheme?

[Joolsg in reply to puzzler1]

It’s a website where all drug side effects are reported. Problem is no GP or neurologist reports Augmentation on Dopamine Agonists so it is vastly underreported & doctors are unaware of how many THOUSANDS suffer terribly. I also reported augmentation on the USA FDA site. Links attached.

fda.gov/safety/reporting-se...

yellowcard.mhra.gov.uk/

[puzzler1 in reply to Joolsg]

Thanks Jools. Just done it! Very satisfying. All a bit too late but still satisfying!

[HilsK in reply to puzzler1]

Yes just done mine too. Copy to GP included !

[HilsK]

Strangely the paper on Augmentation the consultant I am now under, Dr N Silver, is quoted in the NICE guidelines. Note the date this research paper was submitted. Also bear in mind that DOPAMINE AGONISTS were only licenced in 1998. Speaking to him his data was limited to patients that had been on them a relatively short time. It is soooo far out of date.

"A 10 year longitudinal assessment of dopamine agonists reported an annual augmentation rate for pramipexole to be about 7% per year and persisted at a fairly constant rate for 10 years [Silver, 2011]".

Considering the NICE Guidelines have only JUST been updated to include anything sensible related to RLS never mind Augmentation (in August/September 2020) it is amazing that they have named anything at all. The latest research listed in 2016. Why haven't they used the most current research coming out of the States ???

The NICE Guidelines are misleading as Manerva says. GP's do not look beyond the immediate way that a phrase is written ... simple maths is apparently beyond them.

I suggest you refer always to data / webcasts/ webinars from the States ..... particularly from a researcher and respected specialist called Dr Mark J. Buchfuhrer . I have actually spoken to this really approachable, caring, forward-thinking man who is 10 years ahead of 99% of the doctors in the UK.

YOU ARE NOT A FREAK. None of us are .. Was it pretence? Was it imagination? ..

My experience and what AUGUMENTATION did to my body nearly killed me. So let's get the freakiness ,, the sense of wimpiness , the jokes and the moaning out of this conversation once and for all ....

It's NOT funny. Dr Silver .. the same one I named above ... described it three weeks ago in a letter to my GP as a "VERY SERIOUS DISEASE".

And let's NAME these doctors who are truly ignorant and unwilling to learn .... and regardless of them, submit YELLOW CARD REPORTS online at yellowcard.mhra.gov.uk/ ..

[rkatt in reply to HilsK]

Excellent response. I’m concerned because I augmented horrendously. It lasted 5 months. My neurologist has come up with the idea I should replace Pramipexole with the Rotigotine patch. What rubbish! But he may throw the Guidelines at me.

[Hidden in reply to rkatt]

The guidelines do actually say that if augmentation occurs, then the dopamine agonist could be replaced with an alpha2delta ligand. NOT another dopamine agonist.

You can throw the guidelines at him.

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

[rkatt in reply to Hidden]

Thanks. I will. Hard.

[Joolsg in reply to HilsK]

👏👏Neurologists should spend an hour reading this help forum. They’d learn more in that hour than they learn at Med School & in practice.

[HilsK in reply to Joolsg]

I have certainly suggested that .. I am carrying a few business card sized cards with four links on now including HU. They are bright red with RLS on them. If next time I meet them they are just as ignorant they get another. It also says don't go by the NICE guidelines . Listen to you r patients! They've gone down well with some ... x

[smilingjane in reply to HilsK]

Hills

Good idea re the business cards 👍

I want to copy your idea.

May also put the links of RLS support orgs too!

Would you be so very kind as to send me those links.

I have been looking for something concise and pertinent to hand out my GP and anybody who is interested to educate and inform.

Thank you in anticipation.

Jane

😊

[HilsK in reply to smilingjane]

Yes they do have the link to rls-uk on and health unlocked will pur teh other links on here later this after noon XX

[smilingjane in reply to HilsK]

Ahh thank you ⚘

[Hidden]

I belong to several FB RLS groups, and every day many times in the day are people who suffer with augmentation. Many ask...what is augmentation. I see high doses being taken and those people say i dont have any problems taken this and been on it for years those people wont listen to you about augmentation, so you just cant help them. I see people say i am going to have to increase my dose and i try to explain why its not a good idea. some listen some dont, its so sad as you know the eventual outcome of what they will go through.

[Joolsg in reply to Hidden]

Utterly heartbreaking. I agree Elisse. Knowing how bad it’s going to get for them but being unable to get through is devastating.

[Hidden in reply to Joolsg]

I have never had augmentation so dont really know personally what its like, BUT i know just by reading how it effects those who do go through it, i know it can be hell for them.

[Pennyfarthing in reply to Hidden]

I’m so pleased that you haven’t been through it as I’m on the 12 th week and it’s been absolute hell. I thought I’d be admitted to a psychiatric hospital as I lost a sense of who I was, couldn’t stop crying and writhing around the house.

It is now eased but certainly not gone. I was on pramepexole

[rkatt in reply to Pennyfarthing]

I’m glad it’s eased. Pramipexole is VICIOUS. Doctors moan about opioids but throw DAs at patients with both hands. Idiots.

[Hidden in reply to Pennyfarthing]

So sorry you have gone through hell, but keep strong you are doing well and will get through it and feel alot better. We had one member on here a while ago who did get admitted to hospital was in a mess, hallucinating etc. he was going through the withdrawals of his med. I hope you are getting support from your doctor while you are going through the withdrawals.

[HilsK in reply to Pennyfarthing]

Penny farthing .. I have just put a post on elsewhere. I began to come off Pramipexole just over a week ago. It was as if someone had chucked me me off a cliff and mentally I was in a total mess. I was suicidal and couldn't make sense of anything .. I just felt this overwhelming sadness and cried for days and days .. I felt totally unsafe. I have never been so frightened in my life ... Its eased up a little now ,,,, but RLS Is hell .

[Pennyfarthing in reply to HilsK]

That’s just how it was. I was literally sobbing and couldn’t stop. I too was very scared. Also no sleep makes everything worse. I hope things improve for you.

Things are a little better for me now. It’s hard to describe but the ‘fog’ has gone from around and inside my head.

Take your time and good luck

[rkatt in reply to Pennyfarthing]

I went through hell coming off Pramipexole after augmentation. I thought it would never end but it did. It did. I was used to using Cannabis for my RLS, and also Kratom, but they were suddenly ineffective. Once withdrawal was over they started working again. I’m thankful that’s over, and won’t go near a DA again.

[rkatt]

Thanks everyone who replied to my question. I’ve saved and printed out all comments. Very valuable.

[Docholiday1]

They are talking riubbish NICE. I'm on Repinerol and get augmentation. I haven reported it as I'm trying to alter the dose myself. Lots of people in USA have tried all sorts of treatment nothing stops it. I am getting in my left arm as well as my legs now.

[catkinson633]

From the reading I have seen. All DA treatments ultimately lead to Augmentation, without exception. It's just a matter of when not if. The lower the dose (and delivery rate) the lower the level of augmentation. IMHO the low figures from NICE represent short term studies (1-24 months) where augmentation has not yet presented, and therefore not representative.