Rls

[Duke-1]

Hi, i am new to this forum I have had RLS for over 30yrs and on Ropinirole at 2mg 2x a day 1 morning and 1 night time also on Pregabalin at 25mg in the morning and 50mg at night I find this does the trick for me 95% of the time sometimes I have found taking my pregabalin just before going to bed helps getting a good night sleep.

[Hidden]

It's great that this works for you 95%.

I wonder though why you split the dose morning and night. Is this because you get symptoms during the day? If so, has this always been the case?

[Duke-1 in reply to Hidden]

Yes I get it night time day time evening it just varies day to day I also get it in the shoulders which the docs told me was rare but the dosage I am on helps I tried most other prescription medications but found these ones work best for me. The docs would not put my Ropinirole any higher as 4mg the most they recommended for RLS

[Hidden in reply to Duke-1]

It's not always the case but according to the diagnostic criteria for RLS, symptoms occur at night orare worse at night. Similarly it can happen in the arms, shoulders or abdomen.

If these two things, symptoms during the day and shoulders have aleays been the case then that's reassuring. If either happened after you started on ropinirole and particularly if you had to increase the dose then I hope you were made aware of the complications of taking a dopamine agonist such as ropinirole.

These are augmentation, loss of efficacy and Impulse Control Disorder, (ICD). ICD occurs less often but the first two are very common. Loss of efficacy leads to augmentation.

Although 4mg is officially the maximum recommended dose, it does increase the risk of failure and augmentation.

If originally you didn't have symptoms during the day and shoulders but that started happening after starting ropinirole, then that's typical of augmentation. If you're getting 95% relief at the moment then no worry, but you should have been warned of these complications.

[Joolsg in reply to Duke-1]

Having RLS in shoulders, arms, hands is not rare if you’re suffering augmentation. As most people with RLS are treated with dopamine agonists and most have been taking them for many years, the incidence of Augmentation is increasing.

23 years ago, I had RLS in my legs only and never in the day. Fast forward 10 years on Ropinirole and the RLS was more intense and I started having daytime RLS.

It just became more intense and moved to my arms, then my hands, back and face.

I’m now off Ropinirole and no longer have daytime RLS and only get it on my legs.

Watch the video on Augmentation- pinned post top right of this page.

[suesweda]

I recommend avoiding Ropinirole. The potential side effects and the augmentation are not worth the limited benefit. I can't figure out how this drug ever got FDA approval here in the U.S. because it isn't safe or effective.

[Hidden in reply to suesweda]

It IS effective. Dopamine agonists (DAs) were the first drugs specifically used for RLS.

However, the risk of augmentation wasn't perhaps realised at first and as you appreciate is still seriously underestimated. This despite the fact that it's been known about for over twenty years.

There's possibly still some circumstances in which a DA might be appropriate, (up until if and when some new treatment becomes available).

Part of the problem is the lack of awareness about the risk of augmentation and the precautions against it. Hence the inappropriate prescription of them and excessive doses.

If you've suffered augmentation it's easy to see why you can perceive DAs as being evil, yet a lot of people still benefit from them.

However, I always feel compelled to warn people about the complications where people haven't been warned by whoever prescribed one.

Shocking that, as far as I'm aware, currently although patient informatipn leaflets contain warning about the less common Impulse Control Disorder, they don't about the more common augmentation.

[Birdlaydee]

Doc is keeping me on the ropinerole. He added clonazepam. Honestly I feel no difference. When I didn’t take the ropinerole and took Lyrica instead I thought I had been laughed into an electrical outlet. I didn’t realize the ropinerole withdrawl would do that.