ropinerole withdrawal

[wyomingquilter]

I have had restless legs for most of my life. The restless legs are out of control now so my GP put me on ropinerole 4 mg a day to begin with and them upped it 8 mg a day. That’s making me have funny feelings, like I’m buzzed or high but I’m not. So I went to a neurologist and he has started taking me off ropinerole. This is my first week. Cut the dosage but 1/2 mg. I woke up this morning about 1:30 very dizzy. It’s now about 9 am and things aren’t getting better. I was looking for symptoms of withdrawal when I came across an article that has me thinking ropinerole is an opioid. Does any one know if it is or not?

[Joolsg]

No it isn't. It causes worse withdrawal than opioids.I'm so sorry your doctor had you on 8mg Ropinirole. That's negligence. It's abobe FDA max.

Have a look at all the posts on here. Read the Mayo algorithm and look through Dr Berkowski's website.

Dizziness is a symptom of Ropinirole for some people and it is clearly a withdrawal symptom for you.

mayoclinicproceedings.org/a...

sleepreviewmag.com/sleep-tr...

relacshealth.com/blog/why-a...

[wyomingquilter in reply to Joolsg]

thank you for your reply. I will definitely follow up on all ideas you gave.

[SueJohnson]

As Joolsg said it is not an opioid. Starting you on ropinirole at 4 mg was bad as that is the maximum daily dose. Then doubling that to 8 mg is criminal. It's normally started at .25 mg and never increased more than .25 mg at a time. Your neurologist is correct to get you off it, but it may take some time. Normally one would reduce by .25 mg every 2 weeks or so. However if you have only been on 8 mg ropinirole a short time you you may get away with reducing it by .5 mg for a shorter period of time. If your symptoms from the reduction aren't any worse than before you made the reduction then you can continue that way. If uou 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. Dopamine agonists like ropinirole 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). 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 split the doses with 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. 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 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) daily." Do read the Mayo Algorithm which Joolsg gave you a link to. When you get closer to being off ropinirole, post back here and I can give you the instructions again or copy them so you have them since you certainly won't remember them.

[wyomingquilter in reply to SueJohnson]

since I’ve been reading your suggestions, I’ve decided that ropinerole is so dangerous I am surprised my doctor ordered it. I’m thinking of changing doctors. Your information has opened my eyes big time. Thank you.

[SueJohnson]

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 If you can't get an iron infusion post back here and we can give you some advice. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms.

[wyomingquilter in reply to SueJohnson]

I will get this done ASAP. Thank you for the suggestion.

[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, estrogen, 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.

[wyomingquilter in reply to SueJohnson]

I do take melatonin. 5 mg x2 every night. Should I quit taking it right now or wait until I get through with the ropinerole withdrawal?

[Birdland in reply to wyomingquilter]

wyomingquilter, I took ropinirole for 16 years and was up to 8 mg every night. As someone who went through a very difficult withdrawal (because I was on it for so long), my recommendation is that you stop the melatonin first. Best to not have anything exasperating your RLS while you are going through withdrawals. Just my opinion.

[wyomingquilter in reply to Birdland]

I did quit taking it. Thanks for the advise.

[Birdland in reply to wyomingquilter]

👍 Hope you get everything sorted out soon.

[SueJohnson in reply to wyomingquilter]

I agree with Birdland. I would stop the melatonin. If you need something to sleep I would suggest ambien or lunesta. Ambien is advised only for short term or intermittent use but Lunesta is not so may be the better choice. Once on gabapentin or pregabalin you may not need a sleeping pill since they help you sleep.

[wyomingquilter in reply to wyomingquilter]

I did stop the melatonin. My husband had read that it can aggravate the RLS so I quit yesterday.

[Sandalsforever]

My husband was also on 8 mg for several years, and he just started weaning himself off Ropinerole. He is now down to 6 mg a day. He takes two in the morning and four at night. He is going to finish the two in the morning and just take the four at night. He is going down .25 mg every two weeks and has not had any RLS. His doctor was surprised that he was doing it at .25mg, but said if it works do it. She normally starts at .5 mg taper to take someone off of ropinirole. The slower the better for less side affects.

You will need to get your doctor to prescribe you .25 mg 1 mg and 2 mg tablets so you can wean off easier.

Husband is also taking iron with vitamin C daily which may help too.

My husband is feeling better although he does have insomnia sometimes. He has tried the prescription sleeping meds and they work for a few days and then they stop working and then work again when he uses them intermittently. He found the same thing with over the counter sleeping meds (some people get RLS from them, but he does not).

it is a very long process to get off of the drug, but in the end, you may not have it as much RLS as what you have now.

[SueJohnson in reply to Sandalsforever]

That's great that he hasn't had any RLS while reducing.

[Sandalsforever in reply to SueJohnson]

yes, we can’t believe it but it is working smoothly

[wyomingquilter in reply to Sandalsforever]

I hope I get the same results. I’m so tired of RLS.