Ropinerole not working after 10 years

[Scottie99]

Help! Where to go now?

I haven’t posted for a while, mainly because my RLS has been tolerable.

However in the last 3 months it has been unbearable, no doubt through augmentation. I am aware my dose of Ropinerole is way too high (3 x 1mg daily) plus 2 x 50 mg pregabalin.

It’s my daughter’s wedding today, I an attempt to sleep I took 2 x 50 mg of tramadol in addition. I woke up at 2am and my legs have been agony, jumping all night.

Can anyone give advice on where to go when ropinerole stops working?

[Hidden]

The simple answer to when Ropinirole stops working is "when it stops working".

For some people it may be years, for some people less than a year. A piece of string comes to mind.

"Loss of efficacy" is known to happen with the Dopamine Agonists (DAs), e.g. Ropinirole. As is augmentation.

It may be hard to distinguish the two in practice.

Loss of efficacy occurs when it stops working, you realise this when symptoms start to get worse. If you've had to increase the dose at least once or more times then at the time you had to increase it, you could say it had stopped working.

Augmentation also means symptoms get worse, however in addition to being more intense, symptoms can spread from the legs to other parts of the body, occur eartlier in the day, and the "latency" period, i.e. the time between trying to relax and symptoms starting gets shorter.

I had all the signs of augmentaton symptoms were more intense, occurred almost any time of day, in legs, arms, shoulders and abdomen and started a few seconds after sitting or lying down.

As you may have recognised augmentation is the consequence of taking a DA, in your case Ropinirole. Augmentation is more likely to happen with Pramipexole, another DA and less likely to occur with Rotigotine, yet another DA.

The most effective way of dealing with augmentation or loss of efficacy, come to that, is to withdraw from the Ropinirole and replace it with an alternative.

The alternatives include an alpha 2 delta ligand or an opiate. Co codamol in itself is probably not strong enough. Do not let your doctor switch you from one DA to another.

You would need a prescription for an A2D ligand or a potent enough opiate. It's unlikely that a GP will prescribe an opiate for RLS, so the A2D ligands are more "accessible" and they are not known to cause augmentation.

Whatever you do, don't just suddenly decide to stop taking the Ropinirole, you need to wind it down slowly. You also need to consider when to start taking the alternative and how you're going to deal with dopamine agonist withdrawal symptoms. Yoiu may need some help with that.

Have a plan, don't just do it on impulse.

[Merster]

Merster here. I have tried almost all combinations of the go to drugs rls sufferers are given. None work for any length of time until I ended up in emergency with a.kidney stone

I was given morphine for the pain all night and next day my rls was gone .. for 5 days. My family.doc let me try ms contin which is a slow release low dose opioid along with low dose ropinerole. It has been working now for a couple of years. I am a totally glad I had that kidney stone because it put me on to that combination of drugs. Now and then a short hoot of cannabis helps with the insomnia.

[TeddiJ]

This happened to me, as well. I switched to Pramipexole, which is a dopamine agonist but slightly different. I asked the pharmacist and it is totally ok to just switch in a day; I had no side effects, probably because they are similar. It works for me to toggle back and forth between the two. Of course, I am seriously trying to get my Ferretin level up by taking iron and C every day on an empty stomach, along with ALL the recommended supplements (folate and B12, calcium citrate, complete Vitamin E, lots of magnesium, etc. etc). I would like to get off BOTH of these meds so I'm making a concerted effort on the nutrition front. Let us know what you do!! Good luck. The misery-omg-hell on earth.

[Scottie99]

Thanks for your replies. Tonight I have taken 2 x 1 mg Ropinerole, , my 50mg Pregabalin, 2 x di hyrododine/paracetamol, 2 x 400mg ibuprofen and 2 x 50 mg tramadol, all to no effect.

Been in bed for 2 hours, wide awake, legs jumping and in agony.

I even got out of bed and tried the exercise bike. All to no avail

Feeling pretty desperate

[Dogdoo in reply to Scottie99]

One thing that gave at least temporary relief for me was to squat all the way down and stay that way til my legs hurt.

It would get me an hour of sleep then get up and repeat.

Might not help you but i tried everything under the sun when i was desperate and not on any medication.

[Scottie99 in reply to Dogdoo]

Thanks for taking trouble to reply. Unfortunately I have had a knee replacement so can’t squat anymore!