Ropinerole to Gabapentin

[pyramidhiker]

I have received much guidance and helpful information in these posts. My questions are related to a medication switch. I have been on Ropinerole for 3-years and am currently at 2 mg which I take a few hours prior to sleep. After reading all the stories in these posts, reading the experiences of augmentation and transitioning to other meds, as well as reading the research regarding Gabapentin I have two questions. First, I am beginning to again augment on the Ropinerole and do not want to go up in dosage. With that said, has anyone out there made the transition to Gabapentin, or it's equivalents, (and it does not sound like a pleasant experience) and then felt as if they have made a terrible mistake? The second question is that if when on Ropinerole or prior to having RLS and had sleeping problems, did the Gabapentin help with that issue? Just for background, I have a very good Neurologist who is cooperative, I am 69 years, exercise regularly, eat 99% vegetarian, low BMI, and good iron counts, and also not sure it is relevant but live at altitude (7600 ft.). Thank you all for your responses and for this forum.

[SueJohnson]

Answers to your questions: 1) No - I am 83 on 1500 mg gabapentin having experienced augmentation on ropinirole and it completely controls my RLS

2)I had problems sleeping on ropinirole because it didn't control my RLS which woke me up. Now I don't have that problem. However because of a different medical problem I do take lunesta to sleep.

You didn't ask but since you are augmenting and considering switching to gabapentin, here is my advice.

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.

Dopamine agonists like ropinirole and pramipexole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. (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 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 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)."

You say your iron is fine, but what is fine for others is not fine for those of us with RLS. Do you know what your ferritin is? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. Also when you took the test did you stop taking any iron supplements including in a multivitamin that has iron in it 48 hours before the test, didn't eat a heavy meat meal the night before, fast after midnight and have your test in the morning before 9 am if possible. If not, it would show your ferritin higher than it really is. And improving your ferritin can help you with your withdrawal from ropinirole. If your ferritin is not over 100, reply back here and we can give you some advice.

Meanwhile 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, 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.

[Happychappy2B in reply to SueJohnson]

Sue,That's an incredibly comprehensive and useful reply cataloguing so much useful information.

Thank you.

I don't have RLS myself but my wife does and she really struggles at times. I'll be talking to her about your information and seeing what might be done to improve her situation.

[pyramidhiker in reply to SueJohnson]

Sue, what exactly do you mean by Gabapentin will not begin to work for several weeks. First what does several mean? Second, why the delay? Is it because one must find the correct dosage or some other reason. Is this your personal experience or is this based on the algorithm or other research? One of the nice things about this forum is one gets many perspectives and experiences and as there is the issue of human variability. I think sometimes Sue, that because you provide such a well presented and comprehensive posting that others may feel they have little to offer and therefore don't. I would love to hear from others whom have also transitioned from dopamine agonists to Gabapentin. I am wondering if others have transitioned in a different manner and if it was successful or not. Thank you.

[SueJohnson in reply to pyramidhiker]

" it won't be fully effective until you are off it for several weeks" means that gabapentin does not work well not only while you are on ropinirole but also while you are still suffering symptoms from coming off it. Several really means until your symptoms from coming off it settle and that is different for everyone so one can't say 2 weeks or 3 weeks or 4 weeks etc. - thus several weeks.

If you want to hear from others type "coming coming off ropinirole " in the search box and you will get 915 articles and "coming off dopamine agonists" gives 626 posts. Granted many will have my advice but others will give their experience.