RLS For 40 years

[6236]

I am 63 years old and have had rls as long as I can remember. As I have gotten older the symptoms have become worse. I have taken ropinorole for about 20 years and I thank God for it every day because before I started taking it I never got a good nights sleep. The only is issue I have is it doesn’t last but about 6 hours and the rls has become so bad that I can’t even relax and watch tv without the rls starting! My neurologist told me to try the nupro patch that it was a new medication for rls and it would last for 24 hours so I coughed up the money which was $100/ month with insurance and tried it and boy what a waste of money! It done nothing at all so I went back to ropinorole and will stay on it until something better comes along!

[Madlegs1]

Please read up on augmentation.

Probably on a post on this page somewhere.

Good luck.

[ChrisColumbus]

Your profile hasn't been completed to show which country you're in, but as you're quoting a dollar price I assume that you're in the US, Canada or Australasia. It could be useful to know which.

Dopamine agonists such as ropinirole, pramipexole and rotigotine (the Neupro patch that you mention) used to be front line treatments for RLS but are no longer prescribed by experts in the field. This is because for the majority they eventually lead to augmentation - see link - and are then (more than) troublesome to wean off:

rls-uk.org/augmentation-reb...

Alpha 2 delta ligands - gabapentin and pregabalin - and low dose opioids are now the first line treatments.

There are plenty of people on this forum who will advise you on how to switch from ropinirole to a modern treatment, having done so themselves.

There are also many prescribed and over the counter medications which make RLS worse, so it could be useful to know what you take. There can be dietary triggers as well - too much sugar/carbs, too much caffeine (although this helps some), and in my case artificial sweeteners in diet drinks.

Despite being on ropinirole for so long, you might also get some relief from iron supplementation: have you had a blood test for iron levels?

Good luck!

[SueJohnson]

To expand on what ChrisColumbus said: Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin won't work. Check out the Mayo Clinic Updated Algorithm on RLS which discusses augmentation and the latest guidelines on RLS treatment.Https://mayoclinicproceedings.org/a...

Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin is. They 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.

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. Some have used kratom or cannabis temporarily to help. 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). (Pregabalin is more expensive than gabapentin in the US.) 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 as the peak plasma level is 2 hours. 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 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)." If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin).

Have you had your ferritin checked? If so what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible. 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. If you can't get an infusion, let us know and we can advise you further.

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.

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, 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, CBD, 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, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.

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.

By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.

[6236 in reply to SueJohnson]

I have tried gabapentin twice with no success. I’m not sure what to do all I know is that ropinorole works for me and the thoughts of coming off of it and suffering with the rls is terrifying!

[SueJohnson in reply to 6236]

Did you try gabapentin while you were on ropinirole? If so it wouldn't have worked. If you tried it when you weren't on ropinirole did you take up to 1800 mg in divided doses of 600 mg each taken 2 hours apart and gave it at least 3 weeks to work?

If you did then you may need a low dose opioid like buprenorphine once you are off ropinirole.

Also there are other medicines like dipyridamole. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a...

[Joolsg]

Read up on augmentation. As you've been on Ropinirole for 20 years and now can't watch TV, it's drug induced worsening.Pregabalin/gabapentin don't work if taken alongside Ropinirole, because the overstimulated D1 dopamine receptors cause such severe RLS, the pregabalin just won't cover it.

Sadly, you have to go through the pain and suffering of withdrawal before your RLS gets better.

Then you can try iron infusions, pregabalin or gabapentin or a long half life opioid like Buprenorphine.

We have all been in your position and were all in disbelief that the drug that first helped us turned on us. Until you get off Ropinirole and ALL dopamine agonists, you will continue to suffer in the day.

There are now better treatments.

Many people find their RLS improves dramatically after iron infusions. One day, it will be first line treatment everywhere, before any meds are prescribed.

[Simkin]

Sue has said it all but just to add I have during 30 years been through all those pills & potions.Now in my 70s the only thing the works for me is a low dose of buprenorphine.

[SueJohnson]

Rereading your post it is obvious that you are already suffering from augmentation. 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 there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. This means you must come off it. You can do it. Many on this forum have been through it. And you will be able to control your RLS when you are off it.