RLS rules my life

[SilverEvie]

Hello please read my “about me”

[Joolsg]

Oh Evie. Yet another victim of Ropinirole.You augmented, then tried to get offvand they put you on Mirapex and the patch.

As your doctors have advised, the ONLY solution is to get off Ropinirole and yes, it is worse than heroin withdrawal.

Many of us have been in your position and managed to get off Ropinirole.

You're 58 so do it now. The older you are, the more difficult it will be.

Reduce by 0.25mg every 3 weeks. Apply for medical cannabis through project-twenty-21(link below) and ask your GP to provide you with Oxycontin to deal with the worst of the withdrawals which will happen when you get down to the last 0.5mg.

Inevitably there will be 2 weeks of hell with little or no sleep and constant 24/7 RLS BUT life off Ropinirole will be so much better.

Pregabalin will help but only once you're off Ropinirole. Start taking it around 4 weeks before the last 0.25mg dose drop as it takes 3 weeks to be effective.

Take 2/3 weeks off work at this time and make sure someone is around at night as you will fall over a lot from exhaustion.

You can do it, it will be hellish but life afer is so much better. No daytime RLS and if you get the meds right, no night time RLS.

If the pregabalin doesn't cover the RLS after a few months, there are low dose opioids that should work for you.

Cannabis oil with 20%THC was the only thing that helped me sleep during withdrawal from Ropinirole.

drugscience.org.uk/project-...

[RalphWiggam]

Seek our one of the top docs on RLS.org and get to one. They seem to be the only one's that really get severe RLS. Dr Mark Buchfuhrer and Dr. Stephen Poceta are one's I highly recommend in the U.S. west coast area. But there are others.

[Joolsg in reply to RalphWiggam]

Unfortunately Evie is here in the UK. Very few neurologists here know about RLS.Prof. Walker at Queen Square, London is one who does seem to know more than most.

[SueJohnson]

Joolsg has excellent advice as always. Our only difference is I would suggest gabapentin rather than pregabalin because you can increase it by smaller doses (100 mg). Once you find out what dose works you can switch to pregabalin if you want (they are basically the same except at higher doses of gabapentin, you don't need to divide the dose of pregabalin but can just take one dose - divide the gabapentin dose by 6 to get the pregabalin dose). Beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Once you are off ropinirole increase by 100 mg every few days until you find the dose that controls your symptoms. Take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. Typical effective doses are 1200-1800 mg. Most of the side effects of gabapentin or pregabalin will disappear after a few weeks and the few that don't will lessen.

[Butterflysun1 in reply to SueJohnson]

There are also 25mg Pregabalin tabs available for fine tuning. They tend to prescribe the bigger tabs as they are less expensive for the same dose but lower dose tabs are available if need be.

[SueJohnson in reply to Butterflysun1]

But even the 25 mg ones which I am aware of are one and a half times the 100 mg capsules of gabapentin.

[LotteM in reply to SueJohnson]

Sue, where did you get t he factor 6 between pregabalin and gabapentin? Eg suggested starting doses of the two for RLS differ a factor 4. I am not saying you are wrong, just asking.

The choice between gabapentin and pregabalin may be influenced by various things. In The Netherlands (where I live) one is started on gabapentin as I think it is the cheaper option. And although they are similar medicines, people (including me) experience different side effects on gabapentin and pregabalin. And, as you have often pointed out yourself, gabapentin has a far lower and also varying absorption rate compared to a pregabalin. These aspects all together with individual differences make the choice an individual one. Imho.

[SueJohnson in reply to LotteM]

It is well known. Here are a couple of references: olh.ie/wp-content/uploads/2..., or sussexcczs.nhs.uk

[LotteM in reply to SueJohnson]

Thanks for finding and sharing,Sue. Interesting, as it remains a bit difficult. The palliative medsinfo that appeared on your link indeed mentions the approximately 1/6th rate of pregabalin to gabapentin doses. But also that there is no established guidance and that the recommendation is not firm.

But maybe the best there is

Realising the often huge difference between people in general and in addition the very variable absorption rate of gabapentin this 1 to 6 ratio is a good start, but I wouldn't pin myself unto it. Good to have this info, though.

PS Couldn't acces the other one as I am outside of the UK.

[Doversoul]

Hello Silver Evie. You have come to the right place to be with fellow suffers of RLS. I have replied to a lot of posts in the past, and for the sake of not having to repeat myself again would ask that search on membership for my name and read some of my replies to fellow sufferers.Regarding medication, the problem that medics have when prescribing Dopamine Agonists drugs (Ardartrel, Patches, generic Ropinirole) trying to understand whether the RLS symptoms are persisting due to an insufficient dose or too much, which leads to augmentation. The answer to this is to not prescribe them, if close monitoring of the patient isn't possible for whatever reason.

With regard to coming off of Ropinirole and taking Pregabalin it is a slow process and is fraught with worry and difficult days. I was taking 4mg of Ropinirole and regularly augmenting. This was seen by Guys Hospital and quickly prescribed Pregabalin. Every 10days I had to reduce the Ropinirole and introduce the Pregabalin in 0.25mg steps. I had no other medication to help but I was at that time already taking 50mg Trazadone at night, to help with sleep.

Today, I take 50mg of Trazadone each night, and very occasionally, may need to increase to 100mg. At the same time I take 300mg Pregabalin. That is the max NHS / NICE recommended dose and is 75% successful at calming my RLS at night. Most nights I sleep well, but I have stage 3 RLS and there is no cure so I am grateful for the RLS relief I am getting.

The big Pregabalin plus for me is that I can have a normal life. the RLS isn't any longer controlling me. I can now do things during the day and enjoy life to the full: read a book, watch a film , take long train journeys, drive my car, sit still and enjoy a meal where ever I may be.

I sincerely hope that you can enjoy life again soon.

[DicCarlson]

Joolsg advice is spot-on! Do you see that? It's the light at the end of a very long tunnel. Keep strong!