RLS nightmare

[Jimbartlett]

I have had Rls for about 10 years now and am currently on Ropinirole 4mg. Nights are ok but it’s the daytime attacks that are becoming a nightmare now. I just did a 4 hour flight to Europe and despite being early morning, within half an hour my legs were going ballistic. I spent the next 3 1/2 hours walking up and down the aisle much to the annoyance of my fellow passengers. The same happens in the theatre or cinema and I have to stand at the back where possible . In these situations can I take an extra dose of Ropinirole ? Any suggestions or advice mos@t welcome .

[LotteM]

Jim, this is a classic symptom of (dopaminergic) augmentation. This is NOT tolerance to the ropinirole. It means that the ropinirole has actually worsened your RLS.

Do a search on this forum, as there are loads of posts and replies on it. A recent post by Joolsg gives the link to a recent article in Sleep Review Magazine explaining augmentation.

The trick is to -slowly!!- recude the ropinirole. This will initially worsen symptoms, but usually they settle after a while. You may need help.

Get yourself thoroughly informed here and elsewhere first and then discuss with your doctor.

Keep in touch for support and advice. A difficult road lies ahead, but it will bring you to a better life with less symptoms.

[SueJohnson]

LotteM is spot on. You are suffering from augmentation and need to come off the ropinirole. Ropinirole is no longer the first-line treatment for RLS, gabapentin or pregabalin is. Up to 70% of patients will suffer from augmentation which is what is happening to you. It used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. Also have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. This is especially important since you are suffering from augmentation. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. To come off ropinirole, reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as you near the end. But in the long run, you will be glad you came off it. On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. After that increase it by 100 mg (25 mg pregabalin) 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. (You don't need to divide the doses on pregabalin) Most of the side effects of gabapentin or pregabalin will disappear after a few weeks and the few that don't will usually 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 (200 to 300 mg of pregabalin) daily." If you take magnesium take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of it and if you take calcium don't take it within 2 hours. 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 if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

[SueJohnson]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute.

[Jimbartlett in reply to SueJohnson]

hi Sue and Lotte, thanks for your prompt and informative response. I am due to see my GP soon to review my meds and if there is no improvement I will ask to switch to Gabapentin or Pregablin. Of the two which do you think will be best for me . I am 69 and my only othefr medication is Atorvaststin for cholesterol.

[Joolsg]

Oh Jim,We see this EVERY SINGLE DAY on this forum..

It is a worldwide, medical catastrophe.

Dopamine agonists, like Ropinirole and Pramipexole are taken by hundreds of thousands of RLS patients world wide.

The problem is that RLS isn't taught at any stage in medical training and doctors are completely unaware that research has moved on and these drugs are no longer first line treatment amongst experts.

The reason is drug-induced worsening of RLS, caused by the drugs that were supposed to help.

Technically, Ropinirole affects the D2 and D3 dopamine receptors, calms them down, and that stops RLS. However, the D1 receptors then scream out for their share of dopamine, become over excited and ramp up RLS symptoms. That's Augmentation.

The RLS becomes very severe, starts earlier in the day and moves to arms, shoulders, legs etc. Neurologists are just as lacking in knowledge as GPs on augmentation. I've even seen one neurologist explain that augmentation means increasing the dose of the dopamine agonist. That is NOT augmentation.

The more you read and learn about RLS, the better treatment you'll receive. You will have to direct your GP to the latest research and treatment. Links below.

As others have advised, the ONLY solution is to reduce Ropinirole very slowly. 0.25mg every 2 weeks.

Start tonight by splitting the dose. Take 2mg 4 hours before bed and 2mg an hour before bed. Then reduce the earlier dose by 0.25mg every 2 weeks. Then reduce the evening dose. RLS will increase with each reduction but should settle after a few days. You may need a low dose opioid, like codeine, oxycodone or tramadol to help.

As SueJohnson recommends, get full panel fasting bloods and increase your serum ferritin to 100, preferably 200.

Search Ropinirole and Pramipexole in the search engine and you'll see it's like the plague! Augmentation everywhere.

sleepreviewmag.com/sleep-di...

sleepreviewmag.com/sleep-tr...

mayoclinicproceedings.org/a...

relacshealth.com/

[SueJohnson]

I always suggest you start with gabapentin because it can be increased in smaller amounts. You can always switch directly to pregabalin later if you want by dividing the gabapentin amount by 6. Pregabalin is more convenient because you don't have to divide the doses although I don't find that to be a problem. The side effects are basically the same, but some people find that the side effects that bother them on one don't bother them on the other. In any case give it some time to see if the side effects go away or lessen before switching for that reason.

As for Atorvastatin, all statins make RLS worse. Nexlizet (Nustendi (UK) s a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS although the FDA does show it increases RLS for some people and then there is Triglide which seems safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way. And of course statins have there own bad side effects.

[Jimbartlett in reply to SueJohnson]

Hi Sue,

A big thank you to yourself and all the others who responded to my nightmare. I spoke to my GP ( on line ) the next day and by the evening I was on a low dose of Gabapentin and reducing the ropinirole gradually over the next few months. She recommended getting my fasting bloods checked and my ferritin levels which will be done soon. I have also stopped taking the Atorvastatin and cut out alcohol . I feel better for having just done something positive about RLS, Thanks for your encouragement and will keep following the forum. Jim Bartlett

[Boomerang]

I have had RLS since I was a teenager, I am now 81 I have been on every medication known to man ( and woman!), My father had it and I have blessed my son ( now 51) with it. I have in the last 5 months, gone gluten free and almost alcohol free which has given me freedom of RLS during the day and much easier at night. I am a very active woman and have gone through most of the different medications imaginable. I am now on 75mg Pregabalin about 1 hour before bed. I play golf twice a week, heavy gardening and active all day. This is now the most relief I have had in all that time!! I hope this helps you.

[SueJohnson in reply to Boomerang]

75 mg of pregabalin is a starting dose. You might want to increase it by 25 mg every couple of days until you find the dose that completely controls your symptoms at night.

Also Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

[kcraig]

Ropinerole was only about 50% effective for me an made me bad nauseous. Gabapentin was useless. A found a dr. that tried me on a low dose of Methadone and literally saved me from suicide. It's been at least a year with no side effects. The only time it bothers me at all is when I break the "rules" and eat dairy or sugar after 6pm.

[HipHop1972]

Hello Jimbartlett, LotteM and Sue are quite right. I know exactly how you feel, I’ve had RLS for 40+ years and have been taking Dopamine Agonists for many years finally 6mg of Ropinirole and it was going from bad to worse. I well remember flying home from South Carolina and can honestly say I walked every mile of it, luckily it was a night flight so most passengers were asleep so didn’t annoy anyone. RLS-UK and Joolsg advised that I needed to withdraw from Ropinirole but extremely slowly ie. by 0.25mg every 2-3 weeks or until legs settle down a bit. I’m afraid it’s a long haul but definitely worth it. I started my journey on 23 October 2022 and have reduced am down to 1.75mg from the original 6mg. I must say that I’m feeling so much better and find that Codeine helps to take the sting out of reduction but only starting taking the codeine when I had reduced to below 3mg as that is addictive so care must be taken.

You will get there with perseverance and I can promise you that you won’t regret it. Sue and Julesg have a fund of knowledge in this field and their advice is always worth listening to.

Good luck 🤞

[lollydog35]

I have had RLS for 20+ yrs. I have same problem and fly from UK to Australia. At the moment I am finding rolling a golf ball with one foot then the other helps a lot. I know this, like everything else will only work for a while and then I will have to find something else. Good luck