Restless in SD

[Burnzy007]

Hi I am a 65 year old male been suffering with RLS for 30 year, I believe I started augmented with ropinirole last year , have episodes earlier in the day . I was up to 8mg of Ropinirole daily little bites off a 4mg pill when symptoms appeared, usually during trying to relax during the day or not moving much

went to a neurologist, and he prescribed continue taking ropinirole as I was 100mg of pregabalin and 200mg of ropinirole at 6pm and the same at bedtime and continue taking small amounts if I have episodes during the day. I don't know what his next step is , on weaning me off the ropinirole ,It seemed to be working for the first couple of wee I was getting a decent night sleep, but not it seems to be going back to more restless nites, I only get to visit with him every 3 months,

[SueJohnson]

I am confused as to how much ropinirole you are taking. If it is 8 mg you are on twice the dose. You obviously misspoke in saying 200 mg. In any case you are augmenting and need to come off it.

First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut.

To come off ropinirole reduce by .25 mg every 2 weeks or so. Ask for a prescription of these if needed. 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 but they are not up-to-date on the current treatment recommendations. Pregabalin is more expensive than gabapentin in the US. So let me give you the instructions for both in case you want to change.

The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) Normally you would start them 3 weeks before you are off ropinirole although it won't be fully effective until you are off ropinirole for several weeks and your symptoms have settled. After you are off ropinirole for several weeks increase it by 100 mg gabapentin (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 up-to-date on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

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, 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.

[Burnzy007 in reply to SueJohnson]

Sorry, I am taking ropinirole 2mg at 6 and 2mg at bed time , and I take 100mg of pregabalin at the same time and lately I have been tossing and turning at 1 am and will take another 2 m g of ropinirole to get to sleep. The new doctor added the pregabalin, I don't know what his next plan is yet, wait for my next appointment

[SueJohnson in reply to Burnzy007]

If you need more ropinirole during the night don't take an extra 2 mg - that is half the maximum dose and you only need an extra .25 mg or 1/8 the amount. Can you call your doctor and ask him to prescribe .25 tablets? If not you can get an inexpensive jewelry scale on Amazon for around $11 that measures down to .01 gram and shave off a bit of the tablet and measure it to get down to the .25 mg. Do this ahead of when you might need it.

The pregabalin should be taken 1 to 2 hours before bedtime although it won't do you much good if any at this point.

Do read the Mayo Algorithm.

You don't need to wait to see your doctor to find out what his plan is. He obviously is not up to date on the treatment of RLS or s/he would never have prescribed ropinirole in the first place. And waiting 3 months between appointments is ridiculous. You need a new doctor. What city and state do you live in? I may be able to give you the name of a knowledgeable doctor.