Starting Ropinirole

[Dastallion1]

I been on Lyrics for almost a year now and just was diagnosed with Restless leg about a week ago. My doctor put me on Ropinirole but I'm a little eerie about taking it. What should I do?

[Hidden]

Just to clarify things, it seems you are saying you've been taking lyrica for a year and only just been diagnosed with RLS.

In which case, it's not clear why you were prescribed lyrica.

I wonder if you were experiencing the symptoms that have now been diagnosed as RLS before you started the lyrica and the lyrica made no difference to the symptoms.

Lyrica can work for most cases of RLS, not all, it's true. Partly it depends what dose you take.

As regards ropinirole, it is one of three medications called dopamine agonists, (DAs), that are used for RLS. The others are pramipexole and rotigotine.

On the positive side, DAs can be very effective initially for reducing the symptoms of RLS and they do this almost immediately. In some cases they can continue to be effective for months or years.

They are so effective that if you take one, e.g. ropinirole, and it works, then this can confirm a diagnosis of RLS.

Following from this, if you were to take ropinirole and it didn't work, as it also seems lyrica didn't work, then the RLS diagnosis may be wrong.

On the negative side for ropinirole.

DAs can cause severe complications for most people. These can occur after a few months, but it is unusual to take a DA more than about 10 years without complication.

Impulse Control Disorder (ICD) can occur quite quickly, but luckily isn't that common.

Loss of efficacy and augmentation are very common. Loss of efficacy is also a prelude to augmentation. The DA stops working. Augmentation is where the DA starts to make symptoms worse. Significantly worse

Because of these complications, international guidelines for the treatment of RLS recommend that DAs should NOT be used for RLS.

This doesn't mean you shouldn't try ropinirole if you wish. However, if your doctor hadn't told you of these risks then they are in violation of the law of informed consent! They should also tell you how to minimise the risks.

Furthermore, if you've just been diagnosed your doctor should do some blood tests. At least tests for serum iron, transferrin, ferritin and haemoglobin. Also magnesium, vitamin B12 and vitamin D.

Iron deficiency is a major factor in RLS, hence really, iron therapy should be tried before resorting to medications.

If your ferritin is below 75ug/L then you should start on oral iron supplements.

Unfortunately, this is not a quick fix!

Here's some info onniron therapy

sciencedirect.com/science/a...

Also hopefully your doctor has discussed other factors that msy be exacerbating or even causing your symptoms. This could be an underlying condition such as diabetes or thyroid dysfunction. It could also be any other medication you're taking. There are many.

This is assuming the RLS diagnosis is correct, there are things which mimic it.

I suggest you read more about DAs and about augmentation and ICD. There is information on this site ahd you can read about people's experiences. If either occur you wouod have to stop tsking the DA. This can be very difficult to do.

Taking ropinirole is an attractive option as it can bring an immediate relief, but in the long term, it can be a nightmare.

An alternative to DAs or lyrica that's now becoming more acceptable is low dose buprenorphine. You can also read about this on this site. However, it's not so easy to persuade a doctor to prescribe this as it's an opiate.

[Sootired15]

Hi. I've been on Ropinirole for many many years now. It helped (& still does a little) I'm on the maximum dose 8mg at night. Sadly, I have it day & night so no ease in the day. Doesn't cure it at night but eases it most evenings. I have no side effects & don't remember ever having. Hope they help you 🤞

[Hidden in reply to Sootired15]

If you're taking 8mg ropinirole this is twice the maximum recommended dose for RLS. Whoever prescribed you this amount is irresponsible.

From what you say, it is failing and in addition your are at very high risk of developing augmentation if this hasn't happened already.

I suggest you look into weaning off the ropinirole and switching to an alternative. If you continue at this level it will cause serious problems.

[Sootired15 in reply to Hidden]

I had no idea! That's quite frightening . I'll get in touch with my G.P. Monday

[Joolsg in reply to Sootired15]

Your GP won’t have a clue! Most know absolutely nothing about RLS or augmentation. Please research first because you will have to guide your GP. Sad but true.

[Ciduoc in reply to Joolsg]

You may also find a neurologist who specializes in sleep disorders. They are very knowledgeable about rls.

[Joolsg in reply to Sootired15]

You’re suffering augmentation and 8mg is negligence on part of your doctor. No wonder you have constant RLS.

Please read about augmentation and get off the Ropinirole slowly- 0.25mg every 10-14 days.

[Sootired15 in reply to Joolsg]

Thank you. I'll get in touch on Monday. To be honest, I'm unsure of what Augmentation means in connection with Ropinirole but, the reaction from you & the other member has given me something to think about

[Joolsg in reply to Sootired15]

rls-uk.org/augmentation-reb...

rls.org/treatment/managing-...?

Have a look at these links.

It’s a worsening of RLS caused by Ropinirole. Increasing the dose is literally pouring petrol on a fire.

The ONLY way to stop it is to get off ALL dopamine agonists with the help of opioids.

Once off Ropinirole, pregabalin may help but if not, low dose opioids.

You can ask for an urgent referral to a neurologist.

Where are you?

There are several neurologists who know how to deal with augmentation.

[Sootired15 in reply to Joolsg]

I'm in Tameside, Greater Manchester

[DicCarlson in reply to Sootired15]

Basically Augmentation is a Paradoxical reaction - instead of assuaging your symptoms the Drug now increases the degree and severity of RLS symptoms.

[Joolsg in reply to Sootired15]

Sorry not to reply sooner. I don’t know anyone in Manchester but hopefully someone will add some recommendations for a Neurologist.

I know several in London but there must be someone in Manchester familiar with RLS & helping get patients off dopamine agonists.

Kaarina, the administrator, keeps a list of recommendations so I’ll ask her.

[Joolsg in reply to Sootired15]

Kaarina has passed on details of a possible neurologist. Dr C Murphy, Salford General Hospital/Spire Manchester (private).

spirehealthcare.com/consult...

[Sootired15 in reply to Joolsg]

Thank you. I can't believe the help & support I've had from this group since joining a few days ago. Thank you all 👍

[Joolsg in reply to Sootired15]

Hilsk has just posted a recommendation for Dr Nicholas Silver who works at Spire Cheshire & Liverpool

thewaltoncentre.nhs.uk/Cons...

spirehealthcare.com/consult...

[Joolsg]

As Manerva says, why were you on Lyrica (pregabalin)? It usually helps RLS but clearly hasn’t helped you. If you do have RLS, Ropinirole will work straight away ( it’s often used as a diagnostic drug to confirm you have RLS).

Take the lowest possible dose ( no more than 1mg) & if it stops working, reduce and switch to another med to avoid augmentation.