I was diagnosed 9 yr. ago with RLS after my wife videoed me kicking every 13 seconds, not a little spasm, but a full-out mule-like kick! With that said, I went to a neurologist so that I could remain in the same bed with my wife. The doctor perscribled me 2 mg of Ropinerole, which worked fine intially, but the dosage has increased over time to 16 mg. I currently have severe RLS effecting my legs, arms and on occassion my entire body.
My doctor finally relaized I was in the red zone and has since perscribed me several different medicines, including Carbidopa/Levodopa, Pramipexole (1mg) and Pregabalin (3x75mg) and Trazadone to sleep. Granted he trusts me, and did not intend for me to take them all, but rather experiment with them to get off Ropinirole. Over the two months, I've worked off Ropinerole altogether, and reduced Pramipexole from 1 mg to 0.25 mg with the help of Pregabalin and some sleepless nights.
Recently, I've come to realize what augmentation means and how I got there through some of your posts. It seems that all of these perscribed drugs have their own issues, so I wonder, have I simply jumped from one frying pan to another?
Your thoughts would be appreciated.
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Welcome to the forum. You will find lots of help, support and understanding here.
I assume you never took carbodopa/levodopa and am glad you are off ropinirole - 16 mg is four times the maximum dose.
Now you need to get off the pramipexole. First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut.
To come off pramipexole reduce by half of a .125 tablet (ask for a prescription of these if needed) 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 them but they are not up-to-date on the current treatment recommendations. (Pregabalin is more expensive than gabapentin in the US.) Also don't let your doctor switch you to Neupro (rotigotine). S/he may tell you that it is less likely to lead to augmentation but that has been disproved.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [Since you are 65 if you are susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] I am giving you the information on both since gabapentin is less expensive. Normally you would start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks and your symptoms have settled. After you are off pramipexole for several weeks increase it by 100 mg (25 mg pregabalin) every couple of days until you find the dose that works for you.
How much are you currently taking?
For gabapentin 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 or magnesium-rich foods, 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 nor calcium-rich foods 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 on the best iron tablets to take and how to take it.
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...
If you tell me what city and state you live in I may be able to give you the name of a knowledgeable doctor.
Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium, foods that cause inflammation, foods high in glutamate, ice cream, eating late at night, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, low potassium. eating late at night, stress and vigorous exercise.
Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennell, low oxalate diet, a low-inflammatory 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 (epsom salts), 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, playing and listening to music, creative hobbies, meditation and yoga.
Many medicines and OTC supplements can make RLS worse. If you are taking any I may be able to provide a safe alternative.
Wow, you are amazing! I just began reading your response and I’ve learned more than I have before through posts elsewhere over the last decade. I will sit down and absorb all that you have written. My doctor really does care. I got to 16 mg largely by responding to my symptoms in-between doctor visits. He will work with me as you have indicated. Also, I have excellent insurance and can get Lyrica reasonably. Thank you again!
SueJohnson, you asked where I live. Houston, Texas. If you have a doctor(s) that you recommend then please advise. Also, I'm on day two without any dopamine agonist but instead 3x75 mg Pregabalin. Rough night. I have Trazadone and several lotions/balms for leg pain. Will either of the latter two help so that I can get at leaset some sleep tonight?
You are in luck! Houston Methodist Neurological Institute is a Quality Care Center one of only 12 in the country. Dr. William G. Ondo is the director and the best but Dr Andrew Billnitzer and Dr Olga Wahn are also there. These are the only 3 ones you want to see there.
Trazodone should help with the sleep, And the lotions might help with the pain.
I don't usually advise this but if you can't get an appointment soon, you might want to go back on the dopamine agonists while you wait as they can prescribe an opioid to help with your withdrawal.
Sue, thank you for those doctors. Dr. William Ondo fist appoint is mid-July with Dr. Billnitzer in mid-May, so I went with the latter. Dr. Olga Wahn must have moved her practice.
I just looked back and I am confused. You said in your post you reduced the pramipexole from 1 mg to .25 pramipexole which is half the maximum dose and now you said you have been off it for 2 days ??? That should take you 8 weeks reducing by one half a .125 tablet every 2 weeks.
I only took 1 mg of Pramipexole for one night and it caused depression, so I took half that and rode it out. I cut it in half again two weeks ago. Must admit that on occassion I used quick release Carbidopal/Levadopa when it was bad as I didn't know better. I've cut that out too starting yesterday. Thank you for your advice, I will call Houston Methodist Neurological Institute immediately.
Sue, I’ve had RLS on and off as a child, but now for at least 2 years I haven’t had a good nights sleep. I tried the Parkinson’s meds but they came with their own problems and I’m very desperate. I have just been put in zoplicone 7.5 mg hs and 1mg lorazepam. It might be too early to tell as I’ve only been on them a week, but should I stop Zoloft for now? That I’ve been on for 25 yrs and I’m wondering if it’s making things worse. I did have an iron infusion in 2023 which helped for a few weeks btw. I’m at my wits end!
Welcome to the forum. You will find lots of help, support and understanding here.
Zoloft can make RLS worse but you should wean off it not just stop it.
You don't need both Zopiclone and lorazepam since they both do the same thing. You are on the maximum dose of Zopiclone but not lorazepam which is 4 mg. The lorazepam also helps with anxiety. My advice is to pick one or the other, but your doctor knows best, however it should have worked by now. However the real solution is to get your RLS under control so they won't keep you awake.
Are you off the Parkinson's drugs?
Have you tried gabapentin or pregabalin? Both but especially pregabalin also helps with insomnia.
Hi Sue, thank you for your reply. I have tried Gabapentin but like other drugs I found it seemed to slow up bowel peristalsis. That’s the only way I can describe the odd uncomfortable bowel movements I was having.
There are solutions for that like exercise, staying hydrated, taking osmotic Laxatives such as OTC polyethylene glycol (Miralax) and lactulose, which draw water into the intestines to soften stools and stimulate bowel movements, taking probiotics etc. If you want to solve your RLS you will need to solve this. You might want to talk to your doctor about it.
Sue another question! I spoke with my pharmacy. He said I had pramipexole that I was prescribed in October and didn’t take. I’m having such a terrible time so he advised me to take pramipexole and lorazepam. Leave off zopiclone as it’s only for sleep. I’ll take 1/2 my Zoloft in the morning as you suggest. Do you think this is ok?
By the way your kicking at night is PLMD but it is treated the same way as RLS.
All of the following must be true for a diagnosis of RLS: 1) The urge to move the legs and sometimes the arms 2) The onset or worsening of symptoms during periods of inactivity when lying down and sometimes when sitting 3) Symptoms occur or worsen in the evening or bedtime. They are usually dormant in the morning 4) Symptoms get better when walking or stretching as long as it is continued. 5) Can't be explained by another medical or behavioral condition.
My initial thoughts are that your doctor is negligent. What doctor allows 16mg Ropinirole and then thinks it's a goodidea to prescribe levodopa and Pramipexole to get you off Ropinirole???Wow.
Anyway, he seems to have realised his serious error.
Are you off Levodopa as well?
Follow SueJohnson withdrawal schedule and get off ALL dopamine agonists.
Ask your doctor to read the Mayo Clinic Algorithm and the new AASM guidance on RLS. They have relegated all dopaminergic drugs like Pramipexole & Ropinirole to end of life scenarios.
First line therapy NOW is iron treatment. Raising serum ferritin via iron pills or infusions. And replacing all trigger meds ( anti depressants, sedating anti histamines, statins, diuretics, beta blockers and PPI meds).
Pregabalin will hopefully work around 4 weeks after you have stopped ALL DAs.
The ONLY drugs that feed the disease are the dopaminergic drugs you were taking.
Once off those, hopefully your dopamine receptors will start to heal & repair and pregabalin will cover all your symptoms.
Did you develop Impulse Control Disorder?.It's extremely common & more likely on high doses of Ropinirole/Pramipexole.
I have been taking levodopa immediate release to stop the RLS urges as needed, or half a 0.5mg Pramipexole pill if I wake up in the night spazing. The Pregabalin helps, but does not work completely. I will read those reference materials you suggest. Then, I may have to isolate myself, hire a horse walker and tie myself to it for a few days but I’m determined to get off all the dopamine agonists and see where that takes me. Wish me luck.
Oh dear. You really need a knowledgeable doctor.Dopamine Agonists and Levodopa cause an iatrogenic worsening of the disease. They up regulate all the D1 receptors all over your body and create that screaming, tense all over, leg jerking RLS.
As long as you keep taking levodopa and Pramipexole- your RLS will continue to worsen. Driving you mad.
So join rls.org. Find a good doctor.
Keep reducing Pramipexole and levodopa. Do NOT keep taking them. To reduce the severe withdrawals you will probably need a low dose opioid.
Pregabalin will not help until you've been off Pramipexole and Ropinirole and levodopa for around a month.
It's hell. It's difficult. You'll think you will never survive. But you will.
Stay strong.
We have all been through it.
But do NOT go back on Pramipexole or levodopa. You will simply fire up all the D1 receptors and go back to square 1.
Think of these drugs as poison. That's what they are.
my advice as a long-term suffer is to skip all the beginning drugs and get straight to an opioid. Oxycodone and buprenorphine are the way to go. I take small doses of oxy and then I take one dose of buprenorphine every third night. Does the
TRAMADOL…a Godsend. Suffered since childhood and tried everything. This has brought me relief for the last decade. Worked within an hour of first dose. Never looked back and actually decreased my dose over the years. Please try it.
it seems that you have done very well in coming off Ropinirole.
For my part and I am aware we are all different! I was put on Tramadol which has provided me with I hours sleep every night!!. The dosage is 3 x 50mg Capsules
Welcome to the forum. Reading your posts is like deja vu. Over 25 yrs ago, my RLS nightmare started. I was the kicking in my sleep and falling asleep any time I sat down. I was sent to have a sleep study where I learned that the rhythmic kicking had a name - Periodic Limb Movement Disorder (PLMD). My brain was sending out a signal every so many seconds to which my limbs responded. It left me spending hours in light sleep every night leaving me very little deep or REM sleep (Rapid Eye Movement aka dream sleep) and left me EXHAUSTED. I was also very anemic.
They prescribed lots of things for me as well, including shocking amounts of trazodone, Pramipexole and carba dopa levodopa. Suddenly I had RLS too. This became progressively worse as time went on. I was on those meds for almost 5 yrs before learning the levodopa could CAUSE Parkinson’s disease by over stimulating your dopamine production centers. I weaned myself off it with brutal withdrawals, unaware that the pramipexole was doing the same damage. I can’t tell you how angry it makes me that the doctors had no idea what they were doing and prescribing meds that could do such long term damage and make my problems so much worse. I just don’t entertain it. It serves no purpose. It’s done.
It was here that I found the answers. It was here that I’m learned that I needed to get off the Pramipexole as well which was nothing short of a nightmare. The very last phase was the worse. I’d been on it for over 20 yrs. It was also no picnic finding my correct dose on the opioids and waiting for the side effects to subside. I wouldn’t have have made it without the support here.
The people on this forum held my hand through this whole transition which took months. The support they provided was beyond words and I am eternally grateful to them all, especially Sue Johnson. God bless them for their kindness, patience and time.
I’m now on 1,800 mg of Gabapentin (600 mg every 2 hrs - 5:00 PM, 7:00 PM & 9 PM) I take 50-100 mg Trazodone with the last dose of gabapentin and I work hard to keep my iron levels up. I have no breakthrough kicking when I’m awake to speak of and it’s HEAVEN. My husband says there’s no kicking in my sleep anymore either. Occasionally he’ll see a little twitching of a foot and movement but no kicking. It’s amazing. Instead of suffering from CONSTANT sleep deprivation with less than 5 hrs of sleep a night, I now sleep an average of 8-9 hrs. I’m slowly losing weight with little to no effort. I find that do I struggle speaking now. This is beyond the occasional difficulty finding a word. A side affect of the gabapentin. A small price to pay in exchange.
I cannot tell you how much my quality of life has improved. I would never have learned all this without the people here. I wouldn’t have made it without their support and I tell you all this to fervently encourage you to listen to and take their advice and come here often. I pray you find the success I have because of it.
Thank you Leeserann. I'm on day four, taking Ropinirole down from 16mg to 0, and cutting out the other dopomine agonist such as Pramipexole and Carbidopal/Levodopa that I was subscribed has meant three maddening, sleepless nights. However, thanks to the advice I've received on this website, I believe I'm doing what is necessary and that there is an light at the end of the tunnel!
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