Lifetime sufferer

[Sootired15]

Hi everyone. It's only by chance that I found this site today & I'm so pleased I did. RLS is a nightmare that I wouldn't wish on anyone. I've had mine as long as I can remember but, in later life, it's got so bad, it controls what I do & where I go. Even in my own home, I am unable to sit still for any length of time. Movies, restaurants, long journeys etc, are all a huge no no for me now. I can relate 100% to anyone who suffers, even in the slightest, with this awful condition. The only good thing is, it has a name now, I was "that strange child" many years ago

[Hidden]

From what you write it does sound as if you are suffering from augmentation caused by taking a dopamine agonist. (Ropinirole, pramipexole or rotigotine).

In this case, your quality of life could be improved by weaning off the ropinirole and replacing it with an alternative e.g. pregabalin.

Weaning off ropinirole should not be done suddenly this is dangerous. It can also cause severe withdrawal effects so needs to be done slowly. One way of doing this is to reduce the dose in steps of 0.25mg every 2 - 4 weeks.

Unfortunately, you may discover if you talk to your GP about this, they may be quite ignorant about augmentation and how to treat RLS and/or augmentation.

In which case you may find this link useful

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

I'm assuming you live in the UK. If this is not the case, then, sorry, you will not be able to use this link.

If you have any questions about this, please don't hesitate to ask.

[Sootired15 in reply to Hidden]

Hi Manerva. Thanks for the link. I do live in the UK. I have read all you've kindly advised but, although I've never thought of myself as uneducated, although I know what Augmentation means, I having difficulty connecting it with Ropinirole? In simple terms, what is this side effect doing to me?

[Hidden in reply to Sootired15]

"Augmentation" in relation to RLS and the use of dopamine agonosts (DAs) is a particular use of the word. I doubt if you will find it defined in a normal dictionary.

Ropinirole is a DA.

Augmentation in this case refers to a specific medical condition caused by long term use of a DA.

The symptoms of augmentation are -

1). RLS symptoms become more intense

2). They spread from the legs to other parts of the body, arms, shoulders, abdomen

3). They occur earlier in the day, not just at night.

4). Symptoms occur more quickly on staying still.

In my case I experienced quite violent involuntary movements in my legs, arms, shoulders and abdomen. These sometimes turned into spasms. This could happen any time of day from morning onwards. They started within seconds of sitting or lying down.

This condition is due to changes in and damage to dopaminergic cells in the brain.

Increasing the dose of the causative DA in attempt to control these symptoms makes them worse.

The only effective way to treat augmentation is to stop taking the DA.

The condition is identified in the NICE (National Institute for Health and Care Excellence) CKS on RLS. The CKS is evidence based guidance intended to help GPs manage patients with RLS.

This is the link to the index page of the NICE CKS

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

This is the link to the page about "augmentation"

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

Unfortunately most GPs appear to be unaware of this particular CKS, but they will be aware of the NICE.

Additionally most GPs or even neurologists prescribe DAs without warning people of the risks of taking a DA. This is actually unethical and contravenes the law of informed consent.

It also means a lot of people taking a DA, such as ropinirole, suffer augmentation without knowing what it is. The intuitive response to worsening symptoms is to increase the dose and often GPs encourage this. This leads to symptoms becoming even more worse and people taking over the maximum licensed dose. E.g. in your case 8mg, when the maximum licensed dose of ropinirole for RLS is 4mg.

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

You can find out more about augmentation here

healthunlocked.com/rlsuk/po......

Even if somebody isn't yet suffering augmentation, if the dose they're taking is above the maximum, it usually indicates that is has been increased, probably several times. If this is the case, it has usually been increased because it has failed. If anybody has increased the dose to the maximum, e.g. 4 mg ropinirole, then it has FAILED. In which case it should be discontinued and replaced with an alternative as the risk of severe augmentation is extremely high.

I hope this makes it clearer.

[Sootired15 in reply to Hidden]

Yes that's much clearer, thank you. You're very knowledgeable Manerva & I thank you for bringing this to my attention. Had I not stumbled across the group yesterday, I'd have gone on just taking what I'm told. I'm suffering very much with lower back, left hip & leg pain. I did wonder if it's all connected? But, due to current circumstances, it's hard to speak to, let alone see a doctor. I will ring on Monday & try to speak to someone. Thank you again

[mckerr in reply to Hidden]

Too bad the NICE site is only available to UK reidents.

[Hidden in reply to Sootired15]

PS. Augmentation can be so severe that it has a significant impact on quality of life and may cause some people to consider suicide. Certainly chronic depression and anxiety can occur.

There are also physical consequences due mainly to chronic sleep deprivation e.g. heart problems

[Sootired15 in reply to Hidden]

It's all so frightening. I trust my GP but, it seems, possibly too much?

[Hidden in reply to Sootired15]

It is upsetting to discover that our GPs aren't as lnowledgeable as you would hope them to be. However you can't expect them to know everything.

What makes a good GP for me is that they are willing to listen to you and discuss things with you. A good GP wil also be willing to acknowledge gaps in what they know and to research into them or accept any evidence offered to them.

The NICE CKS for RLS contains detailed evidence based information which you can familiarise yourself with and refer your GP to. They will not be in any position to disagree with the CKS.

If you read a lot if posts on here, as I have done over some years, you will see that many RLS sufferers experience mismanagement of the RLS by GPs who lack familiarity with RLS.

If you have RLS it really does pay to be knowledgeable about the condition and know what you need to manage it. Part of this is self management.

For example, your GP should discuss iron therapy for RLS with you. This is also mentioned in the CKS.

However, it really only requires a GP to carry out blood tests for ferritin and haemoglobin. If your ferritin is under 75ug/L you can manage your own iron therapy a GP isn't necessary.

You may need a GP to prescribe an alternative medication for you, but you can wean off ropinirole for yourself.

[Sootired15 in reply to Hidden]

Thank you for all your help

[wilabozo]

That sounds hard. I was in my 40s when I first got it, you must have been young when it started?

[Sootired15 in reply to wilabozo]

Yes, just a child but, all those years ago, it was unheard of. I was just a child who liked to fidget. I'm quite concerned by the warnings I've had since my post.

[sudokufan]

Hi Scotired. You are not alone! I had an appointment with a Neurologist for the first time this year. His first question was "How long have you had this problem?" When I answered "60 years" he reacted with incredulity, but when I explained how clearly I remembered episodes whilst at school, he took me at my word.

So often I asked doctors what was causing my discomfort when relaxing, or travelling, or especially on 'plane journeys, to be met only by a shrug of shoulders.

I have now been taking dopamine agonists for a few years, (at first Ropinerole, later Rotigotine, but they are becoming less effective. I'm not convinced that the "augmentation" proplem that causes some in the group to despise these particular treatments has effected me - yet, but I'm going to try a different medication soon anyway. Others here can give you more advice than I can. If you're in the UK you may find information on the RLS.UK site useful, as I do, or indeed the "nice" guidelines recommended by Manerva.

Very best wishes!

[Hidden in reply to sudokufan]

Not everyone experiences augmentation in the same time or to the same extent.

Some people do experience it in a few months, but for many it seems to be a matter of years. The amount you take and the length of time you take it are factors.

In addition rotigotine is the dopamine agonist least likely to cause augmentation and pramipexole the most, ropinirole being in the middle.

Augmentation can creep up on you over a period of time, it doesn't happen suddenly and in addition, long term use of dopamine agonists can lead to chronic insomnia.

If you're happy to continue taking rotigotine and it's still working then there's no pressing need to change at the moment. However, as you say it's failing I think it inadvisable to consider increasing the dose.

If it fails to the point that your symptoms are distressing then, that would be the time to change whether you're actually suffering augmentation or not.

[sudokufan in reply to Hidden]

Hi Manerva and I hope you are well. I've found it helpful to read the "nice" guidelines you referred to. I'm now aware of loss of efficacy etc as well as augmentation. Thank you!