RLS and changing meds

[Kitty6]

I have been on roprinerole xl (2mg and 4 mg) and the regular. Mostly I take the regular one because the insurance companies don't like to pay for the extended release. Right now, I cut a 4mg regular into 4 equal parts. I take two parts at night, so that's a 2 mg at bedtime and 1 and 1 earlier during the day. I also take 300 mg of gabapentin. If I take any more then that I get a kind of shakiness in my fingers, so that if I were to type on here, the hands would try to go to fast.

One problem is with the regular one, I can't seem to get on any real time schedule to stay ahead of the symptoms so that I spend half my time jumping around until 30 minutes after I take the med it finally kicks in.

The other problem is if I ask the doctor to put me on something else, they want to start me on the very lowest dose and have me stop the roprinerole completly. I cant seem to get them to understand that I've had the RLS for about 35 years and to start on the lowest dose is just insane.

My sleep is only 4-5 hours long if I am lucky. I'm thinking that has something to do with the RLS as well.

I do see my regular doctor next month and I will ask for her to give me a referral to a specialist. I believe my ferritin and iron levels were ok, but I will ask for them to be re-done at this time as well.

Sugar is not good for me, as it will kick the RLS symptoms into high gear.

Any advice is appreciated. p.s. I'm in San Antonio Texas

[LotteM]

Hi Kitty, that doesn’t sound good. If you have all day symptoms, very likely you are suffering from augmentation, which is worsening of the RLS caused by the medicines to treat it (specifically dopamine agonists, in your case the ropinerole). Do some reading around on this forum and you’ll learn quickly.

Indeed, you’ll have to come off the ropinerole (very slowly in small steps) and your RLS will improve. But you need help and support from your doctor. It may be wise to have a good look at the website of the US patient organisation and become a member: rls.org. It is worth it. They have a series of quality care centres, and support groups. And lots of information

In Texas, a well-known specialist is Dr Ondo, but he is in Houston, several hundreds ofkm away. Maybe you can get a tele-appointment?

In any case, do not increase your dose any further. Do not cut XL tablets (normal tablets are fine, good for small reductions). Do not get switched to another dopamine agonist (pramipexole with various brand names, mostly known as Mirapxin or Sifrol) or the Neupro patch (rotigotine). And most of all, do not stop the ropinerole suddenly.

I am sure Sue will join in soon with her collated knowledge and advice text 😃. It is a lot, but quite comprehensive.

Finally, our treatment ‘bible’ is the Mayo Clinic Proceedings paper with updated guidelines: mayoclinicproceedings.org/a...

It will take time and perseverance, but you WILL get much better.

[SueJohnson]

Lotte is 100% correct. You are 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.

That means you need to come off it as it will only get worse and you are on the maximum amount of ropinirole.

Forget the ropinirole ER. As Lottie said you can't cut them.

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 or you may be able to reduce more quickly. 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.

Ropinirole and pramipexole are no longer the first-line treatment for RLS, gabapentin or pregabalin are. 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. (Pregabalin is more expensive than gabapentin in the US.)

The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 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 you are off ropinirole for several weeks 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 split the doses with 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. 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). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Have you had your ferritin checked? If so what was it? That is the first thing a doctor should have done.You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.

If not ask your doctor for a full iron panel. Stop taking any iron supplements including in a multivitamin 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 at Https://mayoclinicproceedings.org/a...

Dr. William Ondo, a neurologist, is one of the best doctors in the world. It would be worth it to drive there. After the first appointment you can probably do telehealth. Ask when you call.

He is located in: Houston Methodist Hospital, 6560 Fannin St Suite 1002, Houston, TX 77030. His phone is Phone: [phone]

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, 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, 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, C, 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.

[Joolsg]

I agree with SueJohnson and Lotte. You need to switch to normal release Ropinirole and reduce slowly.Dr Ondo in Houston, Texas is a top RLS expert and will help you through withdrawal and onto better meds. You can see him Face to Face initially and then further consultations can be via Zoom.