Ropinerole

[Marzipana]

I've been on Gabapentin and Ropinerole for 25 years, and finally got off due to the terrible effects of augmentation. I've been on Lyrica now for about 6 months, and other than not having daytime symptoms, my nights have been worse than ever. I was at a motel recently, and took one Ropinerole because I was desperate....I then slept 7 hours! Does anyone know how often I might be able to do that without augmentation starting again? I'm terrified that might happen, but also I'm desperate to get some sleep occasionally! Thank you in advance for any suggestions!

[SueJohnson]

how have they been worse than ever? Why did you wean off gabapentin and how much pregabalin are you taking?

[SueJohnson in reply to SueJohnson]

After being on ropinirole for 25 years your receptors ar probably damaged so gabapentin and lyrica won't work. So you will need a low dose opioid. Buprenorphine tablets are the best since they last 24 hours whereas most the others only last 4 to 6 hours and have to be taken that often or you will suffer mini withdrawals. 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...

You could probably take ropinirole every 4 to 7 days until you see your doctor in late April but don't take it any more often even though you will be tempted to.

Where do you live? I may be able to give you the name of a doctor who is uptodate on RLS since you don't know if the doctor you will be seeing is.

[Busunsc713 in reply to SueJohnson]

Do you know of a physician in the Northeast Florida area whose current and competent in treating RLS?

[SueJohnson in reply to Busunsc713]

Dr Nura Festic at Jacksonville Sleep Centre

[Busunsc713 in reply to SueJohnson]

Thanks

[SueJohnson in reply to SueJohnson]

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 when you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and 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. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them 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, 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, 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.

[Marzipana in reply to SueJohnson]

Hello Sue, Thank you for your very helpful response! I was so exited to see responses to my situation with RLS. I came upon this site accidentally while Googling how much Ropinerole I could take without starting augmentation. Up until I saw specialists at Mayo in Rochester, I was on three (0.5mg) tabs of ropinerole, spaced out from 6:30pm-bedtime, as well as three (300mg) capsules of Gabapentin spaced out as well.

From about May/June to the present, I've been prescribed the maximum dose of Lyrica, six (50mg) capsules at bedtime. I've always felt that it wasn't doing much, and it didn't seem to matter if I took 3 capsules or 6! I did have a withdrawal episode though, last month when I ran out of Lyrica and couldn't get a refill for several days.

I also had an iron infusion in June which didn't make a difference in my RLS symptoms. About a year and a half ago, I started taking Vitron C, an otc iron suppliment that has a crazy high % of iron. I got some relief for about a month, but that was before I started going off Gabapentin and Ropinerole.

BTW, I live in Wisconsin. I am with Marshfield Clinic now, due to switching my insurance at the beginning of the year 2024. Oh, I ordered CBD gummies, 50 MG CBD, 5mg THC from a place called Medterra. They arrived yesterday, so I took my first gummy last night. I slept an hour, then was awake the rest if the night with severe RLS, as well as a very woozy/dizzy feeling, which made walking, stretching, marching, and going up and down stairs very dicey! I also did acupuncture for over a month, taking Chinese herbal supplements and even cooking.... LIVER...which I could barely eat!!! I had some decent sleep results for less than a week, so I'm guessing that was a placebo effect. That and the CBD is expensive, so I'm very limited as to how much I can "give it a try"!

Thanks again for responding!

[SueJohnson in reply to Marzipana]

Do you know what your ferritin is or what it was after your iron infusion? If not ask.

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 at Https://mayoclinicproceedings.org/a...

Even though you went to the Mayo Clinic in Rochester the doctor you saw obviously wasn't completely familiar with it as 300 mg of lyrica is not the maximum dose. 450 mg is normally recognized as the maximum although one can take up to 600 mg. And the usual effective dose according to the Mayo Algorithm is 300 to 400 mg. Plus s/he should have suggested a low dose opioid.

When you had withdrawal symptoms after not having lyrica for a couple of days, did you have increased RLS symptoms? If so then it probably was working and you just didn't have enough of it. In that case you could try increasing by 25 mg every couple of days until you find the dose that works for you. If you get to 600 mg and it doesn't help reduce by 25 mg every couple of days or more slowly if needed until you get back to 300 mg and then reduce by 25 mg every couple of weeks to weeks to avoid withdrawal symptoms. If you do it slowly enough you won't have any withdrawal symptoms.

Hopefully the Marshfield Clinic will be more up to date and willing to help you.

On your iron tablets, take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

[Claire_lc]

Hi Marzipana, I don't know anywhere near as much as Sue or some of the others on this forum, but I can tell you that I had a similar experience with augmentation on ropinirole (in my case after about 11 years).

Like you I finally managed to come off and started taking pregabalin. That was in April last year. In October, despite the pregabalin/Lyrica, the RLS was bad enough for me to try ropinirole again, and yes, just like you it worked. But... and this is a big but... about a month later the augmentation started back up again, only this time WAY worse.

I quickly stopped the ropinirole and took every last tablet to the pharmacist to be disposed of. I think that, once you've augmented on a dopamine agonist, your body remembers, so I'd be really wary of taking any more.

I'm looking into buprenorphine now, as per Sue's advice. It's a scary prospect, but the people on this forum are so incredibly kind and supportive. Read everything you can (the links to studies on opioids for RLS are easy to find here) and then decide what's best for you.

Good luck with it. I know how miserable it is to be up all night when you're desperate for sleep. 😴

[Marzipana in reply to Claire_lc]

Hello Greencatgirl!! THANK YOU for your response. It is so helpful, for your information, as well as to be able to find others who have experienced exactly what I have! I always feel that doctors don't really know how horrible RLS can be, and how it diminishes so much of one's well being. I was surprised that even at Mayo in Rochester, the best they could offer was a rather flippant suggestion for the highest dose if Lyrica. I too am willing to try methadone or other low dose opioids, but even though I've told doctors about books or articles I've read that show these drugs offer relief, the doctors won't talk about that!! So frustrating...I mean, I'm 64 and have had RLS all my adult life, I don't smoke or do drugs or even drink alcohol much....are they worried about addiction?!?Thank you again for your response! I'm sorry you too suffer from RLS!

[Claire_lc]

I'm really glad you found that helpful Marzipana! And you are so right, doctors have NO CLUE how awful RLS can be. I find that my friends also struggle to understand what's going on. There's this sense that it's all in your head!!!! 🤯 The only person I know who has RLS is my brother, and I've watched him punch his legs at night in a vain attempt to relieve the discomfort.

Interestingly, he mentioned recently that his symptoms had improved somewhat after varicose vein surgery. As a result I went to get my legs checked, and discovered that, despite no external signs, my veins were in a very bad state. (My father and grandfather both had varicose veins and leg ulcers, but somehow I thought I'd escaped it). I'm desperate enough to try anything, so we raided our savings account and I had the procedure two weeks ago. My surgeon says I need to wait at least 3 months before thinking about whether there's been an improvement, so a way to go still. To be honest I don't hold out much hope, as I know all the research is clear that RLS is a neurological, not a vascular, disorder. I'll post on this forum if it does miraculously make a difference.

I saw you also mentioned CBD. I've tried medical cannabis (vaping and oil, various strains), and if anything it made my legs worse.

I see you're in the US, so you could maybe contact some of the more experienced doctors there? I've seen so many names mentioned - people who seem to care greatly and really know their stuff. Dr Buchfuhrer is the most well known. I believe SueJohnson can share his email address.

[Marzipana in reply to Claire_lc]

Thank you for the latest response, Greencatgirl! I got varicose veins when I was pregnant with my my sixth child. Eventually I had some vein surgery on my right leg. It didn't affect my RLS one way or the other, but it helped with the discomfort of the bulgy veins. I hope your surgery gives you some relief. It's interesting (sad) that your brother has RLS as well. My Dad had it, and 3 of my adult kids have experienced it. My youngest, the only daughter, was diagnosed with Crohn's disease when she was 8 (she is almost 27 now). She has had problems with iron deficiency due to the Crohn's and thus a few mild episodes with RLS. Two sons who both have issues with mental health (depression, addictions, and one with bipolar disorder) have had RLS due to some prescription drugs, but mercifully none of them had full blown RLS. I had free genetic testing done voluntarily through Mayo last year and found that I have a predisposition to "movement disorders". Haha, no sh#*!!! I didn't need a genetic test to know that!

I am grateful that my afternoon/evening symptoms are mostly gone. I don't know if that is thanks to Lyrica or just happened when I got off both Gabapentin and Ropinerole. Unfortunately the nighttime symptoms became worse than ever!

Onward and Upward!

[Claire_lc in reply to Marzipana]

I can't imagine how tough it must be to manage your own condition on top of your kids' health issues. You're amazing!

Interestingly, my afternoon/evening symptoms also disappeared once I'd come off ropinirole, but just like you the nighttimes became much worse. If only we could work out what was happening in our bodies and why!

Stay strong and don't give up on Lyrica. It's not a miracle cure but it really does help.

[Marzipana in reply to Claire_lc]

Thank you, Greencatgirl! I'm so impressed with what I've learned from people through Health Unlocked. Way more than what doctors tell me. But most of all, I appreciate the kindness and understanding of others dealing with RLS.

[Claire_lc in reply to Marzipana]

I've felt the same way! It's been beyond helpful and reassuring to receive so much support and genuine knowledge. But it's also depressing to realise that doctors aren't always the experts we believe them to be. x

[sigurdur]

After being off for 6 months I started again taking pramipexole and it only took a few days for augmentation to kick in. The body for sure remembers.

[Marzipana in reply to sigurdur]

I'm sorry to hear that. Is pramipexole used to treat RLS? I am not familiar with that. I never knew about augmentation until I was on Ropinerole.Is there a "Plan B" for you?

[SueJohnson in reply to Marzipana]

pramipexole is a dopamine agonist like ropinirole.