RLS symptoms spreading

[Elouis]

The earliest occurrence of RLS during the mid-teens, but were controllable without medication since I kept it to myself. During radiotherapy for prostate cancer, they emerged at age 62 years. I started taking ropinirole up to 4mg then Rotigotine and clonazepam since. Episodes of RLS randomly occur affecting my whole body and resulting in sleeplessness, but drowsiness and fatigue during the day. Acupuncture and massage have provided temporary relief from symptoms.

[SueJohnson]

Sounds like you are augmenting since you were on the max ropinirole and you are now having symptoms affecting your whole body. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or when they move to other parts of our body (arms, trunk or face) or when the intensity of your symptoms worsen. Your doctor should never have put you on ropinirole. That used to be the first line treatment but is no longer. It is important that you check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it at

Https://mayoclinicproceedings.org/a...

Have you had your ferritin checked. If so, what was is? It should be over 100 and preferably 200. Once you know what it is, check back here for advice. Be sure you get the actual results and not just your doctor saying it is OK since what is OK for normal folks is not OK for RLS. Now, since you are augmenting, you need to come off the Rotigotine. Are you on the 3 mg patch or the 2 mg patch? You will need to come off it very slowly, reducing only every 2 or 3 weeks. I will let others advise you how to do this - I imagine you just cut the patch. If you were still on ropinirole at 4 mg you would need to reduce it 16 times before you are off. You will suffer greatly during this time, but you will be glad you did it in the end. You may need a low dose opioid temporarily to help out with the symptoms especially at the end. Start gabapentin at least 3 weeks before you are off the patch since it takes at least 3 weeks to be effective, although it won't help much until you are off it for several weeks. Beginning dose is usually 100 mg gabapentin since you are over the age of 65, although I started at 300 mg when I was 79. Once you are off the patch 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.

[Elouis in reply to SueJohnson]

Thank you for your supportive reply. The recent blood test results are still held up at the doctor's practice. I had been on 4 mg patches, but reverted to 6 mg ropinerol since May 2020. The clonazepam dose has been 3mg since 2016.

[SueJohnson in reply to Elouis]

Oh wow. You are on one and a half times the maximum dose of ropinirole. Your doctor should never have put you on either ropinirole or neupro and was extremely negligent in increasing it that much. If he is not willing to learn by reading the Mayo Clinic article then you need to switch doctors. You will need to reduce the ropinirole by .25 every couple of weeks and you have a long road ahead of you. But it is worth it. We are here for you.

[Elouis in reply to SueJohnson]

Thank you for the advice, but how do I change my consultant of 10 years at National Hospital for Neurology and Neurosurgery?

[SueJohnson in reply to Elouis]

Sorry - I can't help you on that one as I live in the US. I suggest you post that question. I have seen it discussed on this forum. Mention the 6 mg of ropinirole he prescribed in your post as the reason you would want to switch. I have seen this discussed in this forum.

[Joolsg in reply to Elouis]

Ask to see Prof.Walker at Queen Square.Sadly, you've received very negligent treatment so far. You are clearly suffering Augmentation of symptoms & you should have been advised to get off Ropinirole slowly.

Reduce by 0.25mg every 2 weeks.

I'll bet they haven't tested your serum ferritin or warned you of Impulse Control Disorder or the high risk of Augmentation of symptoms.

There have been a few negligence cases against UK neurologists for this.

Please change to Prof. Walker and in the meantime, start reducing the Ropinirole.

Ask your GP for full panel.bloods & if serum iron below 60 or serum ferritin below 100, start taking ferrous bisglycinate last thing at night every other night to raise levels fast.

Withdrawal from Ropinirole is hellish and you'll need help - I used tramadol every 4 hours during last 3 weeks and cannabis.

Read everything you can because, as you probably now realise, neurologists in the UK know very little about RLS or augmentation.

Print off the Mayo algorithm and send it to the neurologist who had you on a Parkinson's disease dose of Ropinirole.

[Elouis in reply to Joolsg]

I have been treated by Prof. Walker since 012 regarding RLS.

[Joolsg in reply to Elouis]

If you wouldn't mind, could you send me the name off the consultant at Queen Sq who has been treating you by Message. It's the 'chat' button above.

[Elouis in reply to Joolsg]

Professor Matthew Walker is my consultant for RLS.

[Joolsg in reply to Elouis]

Oh my goodness. I'm completely shocked. I thought he was one of the good ones. I've been recommending him to others on here and I'm absolutely stunned he's allowed you to get to 6mg Ropinirole.Has he warned you about augmentation and Impulse Control Disorder and given you info about ferritin?

I'll have to put a caveat on my recommendations as that has really shocked me.

Have you told him about your worsening RLS and that it has spread to other body parts ( classic augmentation)?

I don't want to condemn him just yet if he doesn't know about the 6mg and the other body parts being affected.

[Elouis in reply to Joolsg]

I was taking the prescribed patches of 4mg Rotigotine up to April 2020 when I had to replenish my medication while on holiday and unable to get a return flight to UK due to Covid-19 pandemic restrictions. Ropiniroel 4 mg was permitted in place of the Rotigotine patches by the consultant in the US. On my return in July 2020 I got this change confirmed by my GP. However, I had to increase the dose to 6 mg with my GP's consent in October. I mentioned this change of medication to Prof. Walker during my phone appointment in June 2021. Bottom line, the medication does not work and that may be augmentation at play.

[Joolsg in reply to Elouis]

It most definitely is augmentation at play. If dopamine agonists stop working the dose should NEVER be increased. Rate of augmentation is 8% per annum, cumulatively. It's just a matter of when, not if.

Read all you can. Print off the pinned post on augmentation and the Mayo algorithm.

Sadly, the more you read, the more you will realise that the UK is about a decade behind the top US experts who see thousands of patients a year. A UK specialist will see about 20 a year so cannot see the mounting evidence of augmentation.

Reading this help forum should be compulsory continuing education for all GPs and neurologists.

I suggest you slowly start reducing now and get your ferritin levels above 100.

Hopefully, by the time you're down to 1mg or 0.5mg, you can see Prof. Walker & ask him to prescribe pregabalin or a low dose opioid.

[SueJohnson]

I have researched it and yes, you would cut the patches.

[SueJohnson]

Your drowsiness and fatigue during the day is a result of the clonazepan since its half-life is 40 hours. You need to switch to one with a shorter half-life. You can't just quit the clonazepam. You will have to come off it slowly. And if you switch to another benzodiazepine you might not need to taper off it. Check with your doctor on this. Xanex is benzodiazepine and has a half-life of 11 hours and a peak plasma of 1 to 2 hours.

[Elouis in reply to SueJohnson]

Thank you for this update on my medicines. Your abundant help is much appreciated.

[BeyondDespair54]

We've reduced my Ropinirole dosage from 8 mg. to 3 mg. by supplementing it with 200 mg. of Pregabalin. Doing okay now.

[Elouis]

I've been diagnosed with demyelination since 2005. MS was suspected in 2011 and was prescribed pregabalin 300 mg daily.

[Joolsg in reply to Elouis]

Have you had an MRI or a lumbar puncture to investigate the demyelination? If MS, you need a diagnosis so you can start treatment.

[Elouis in reply to Joolsg]

The lumber puncture was done around 2014. So painful that its best forgotten. I had an MRI in February 2021 and follow up F2F consultation with Prof. Toosey's team in November 2021. No firmed diagnosis of MS. To the best of my knowledge, its status is suspect. Its puzzling that I'm prescribed pregabalin, which is associated for epilepsy.

[Joolsg in reply to Elouis]

That's frustrating. They need to confirm what they think is causing the demyelination. I have MS and RLS.I'm so sorry about the high dose of Ropinirole you've ended up on.

I was in your shoes in 2015 and eventually found this site and was helped by the knowledgeable people.

I went through withdrawal in 2016, hellish but so much better to be off Ropinirole and not have that intense all over RLS.

There are better treatments out there and dopamine agonists are no longer prescribed as first line treatment because of the hundreds of thousands suffering terribly on them with ICD and augmentation.

[Elouis in reply to Joolsg]

Thank you for your response. I'm glad your perseverance achieved success.👍

[SueJohnson]

Start gabapentin at least 3 weeks before you are off ropinirole since it takes at least 3 weeks to be effective, although it won't help much until you are off ropinirole for several weeks. Beginning dose is usually 300 mg gabapentin. Once you are off ropinirole for a few weeks, increase it by 100 mg every couple of days until you find the dose that works for you. 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. Most of the side effects of gabapentin or pregabalin will disappear after a few weeks and the few that don't will lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily."

[Elouis]

Thank you for your kind support. My consultant has given me an appointment later this year. Also, like you had mentioned earlier, has asked if I had my ferritin checked. In the mean time I should take iron supplements to ward off augmentation. The next treatment option are opioids.