Greetings all. I I've been reading quite a bit about Ropinirole and why it's bad. I was first prescribed it in August 2021 for RLS. I have 2 spinal cord injuries resulting in neuropathy in both feet and my right leg. My leg jerks uncontrollably throughout the day and night resulting in a terrible quality of life. I can't sleep, and then can't work at my computer during the day. Ropinirole changed all that and helped me for about 3 months. I was taking a 50mg pill twice a day, which then creeped to 4 times a day, and then hit 5 times a day which just wiped me out and made me so tired and not wanting to do anything. I felt like I was on a 4-6 hour treadmill and it ended up making everything worse. It seems my RLS worsened under ropinirole requiring more and more of it to get any relief.
My neurologist feels ropinirole is just fine, and I should keep using it. He says it's not addictive and has no long term negative effects, which seems to go against everything I have read. I have asked to be switched to pregabalin (Lyrica) and he, seemingly reluctantly, prescribed it to me today (I don't have it yet). However he only prescribed me twice a day 75mg of pregabalin which I am not sure is going to be enough to combat my round the clock symptoms. He wants me to keep the Ropinirole and take one of those if the pregabalin is not enough, but I have read that they shouldn't really both be taken and that any Ropinirole might negate effects from pregabalin. He seems to really prefer ropinirole for this over pregabalin. This goes against everything I have read which is causing me some concern.
Thoughts?
Written by
vertices
To view profiles and participate in discussions please or .
I should have added that I have dropped ropinrole usage to a single 50mg pill each night before bed, and refuse to take any more than that. It was a tough month, and I'm still suffering, but hoping pregabalin provides enough relief. I am also now taking an iron pill (I have ferritin lab work scheduled as my last blood work didn't include this) as well as turmeric and magnesium daily.
my experience with ropinole is same your body keeps wanting more. it took me over 8 months to stop taking ropinole. after around 9 weeks off i have had insomio so bad. i started taking .5 ropinole at night so i can rest. after third nite i can tell that i needed more ropinole. so last nite i went with out and i had one of my worst nights. so ropinole no for mepregabalin i had a hard time with to and all i wanted to do after taking it was eat. i would say no to both
I assume you meant a 5 mg pill as 50 would be 12-1/2 times the normal maximum for RLS. You should withdraw slowly by .25 mg every couple of weeks. You will have increased symptoms. You may need a low dose opioid temporarily to help out with the symptoms. 3 weeks before you are finally off ropinirole start pregabalin as it won't help until you are completely off ropinirole for several weeks. Beginning dose is usually 75 mg pregabalin or 50 mg if you are over the age of 65. After that increase it by 25 mg every couple of days until you find the dose that works for you. take it 1-2 hours before bedtime. You only need to take t once a day. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily." which is equivalent to 200 to 300 mg pregabalin. Don't take magnesium within 3 hours of taking pregabalin as it will interfere with the absorption of the pregabalin. 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... when you see your doctor ask 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 as that is when your ferritin is lowest. When you get the results, ask for your ferritin and transferrin saturation numbers. You want your ferritin to be over 100. Improving it to that helps 60% of RLS patients. If your ferritin is less than 75 then take 325 mg of ferrous sulfate with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day at least 1 hour before a meal or coffee and at least 2 hours after a meal or coffee since iron is absorbed better on an empty stomach. If you have problems with constipation switch to iron bisglycinate If your ferritin is between 75 and 100 or if your transferrin saturation is below 20, you probably need an iron infusion since iron isn't absorbed as well above 75. Take magnesium at least 2 hours apart since it interferes with its absorption of iron. It takes several months for the iron tablets or iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks if you have an iron infusion or after 3 months if you are taking iron tablets.
Thank you so much. Yes sorry, I meant 0.5mg pills. So I was up to 2.5mg per day. I am 46 years old. I wasn't on it long enough I don't think for it to be that hard to stop. I am down to just a single 0.5mg pill per night already. I just don't sleep well enough and have trouble during the day. I think I can get by without an opioid so will skip that unless I really think I need it. I do also use THC/CBD oil at night to help me sleep. So you feel the doctors recommendation to take both pregabalin normally as well as ropinirole when I feel need more is incorrect? I would think if 150mg of pregabalin isn't enough, then I would want another 75mg of pregabalin instead of adding in ropinirole. Yes I have ferritin checks coming up soon.
Yes your doctor's recommendation to take both pregabalin and ropinirole normally is wrong. If 150 mg of pregabalin isn't enough, increase by just 25 mg every couple of days until you find a dose that works for you.
I need to contradict Sue. Actually, it is one of the recommended approaches to combined different types of medicines if one isn't efficient enough. I am not sure it is explicitly mentioned in the recent update guidelines, but it has been in previous guidelines and associated papers. That way, people may get by with lower doses of each medicine type, rather than high doses of one type with associated (negative) side effect.
Additionally, if you want to get your blood assess for iron, do make sure it is an early morning fasting panel and don't forget to stop the iron pills at least one day before. I usually stop it several day to a week before. To make sure.
And indeed 75mg of pregabalin is low for most, but not all. And in combination with the ropinirole it may work out just fine. Finding something that works for you is sometimes - and apparently in your case - a more or less tedious affair. Do persist and accept that it doesn't have to be perfect, just good enough
I agree that sometimes one needs to combine medicines, but in this case he hasn't increased the pregabalin enough to know it doesn't work alone which is preferable. The Mayo Clinic article suggests combination therapy for refractory RLS but that is not the case here.
Find a new neurologist. Clearly not up to date on latest RLS research. The Mayo algorithm written by the top US experts makes it clear Ropinirole is no longer first line treatment and the average dose of pregabalin is around 250-300mg.Join rls.org and you can find help groups near you in the US.
I am so sorry for your pain and discomfort. I can relate. I took ropinirole for many years. My RLS became worse and the neurologist said that's what happens and it's called augmentation. He put me on extended release 4 mg and gabapentin wanted me to stay off the regular ropinirole. Not so fast. I tried to gradually cut back and back and did so until only the 4 mg was needed except for rare occasions. I had bad side effects from gabapentin and i took it for quite awhile.. Then I developed neuropathy. OMG how uncomfortable, painful and disturbing that is. So I began to need more of the regular as it helped the neuropathy. My neurologist hit the roof and wanted me to stop the regular. That is when I asked to have pregablin (lyrica). He started me at 75 increased to 150 then to 300. You have to start out slow. The lyrica has helped sooo much. Especially for the neuropathy but for both. I rarely have to take the regular. You can't drink on lyrica which is a bummer. Not that I drink...but enjoy wine with dinner and occasional cocktail. It really boils down to what works for you. What really pisses me off is these neurologist not giving us enough meds and or acting as if it's not that big of a deal. They have no idea the pain, discomfort and basic torture RLS can be.Let me know how you do and any bright ideas. I'm searching. The side effects are too much for me anyway.
I really wish you well. RLS is a horrible syndrome.
I'm not sure there is any general reason not to have a little alcohol with pregabalin. I was told that it is fine, but you need to take steady because the effects of alcohol are a little like the effects of pregabalin e.g. getting a bit disinhibited and the two together can be a bit too much if you are not ready for it. Obviously alcohol should only be taken in moderation anyway but I'd check with your doctor and the literature - RLS take enough enjoyment out of your life without removing the little pleasures.
Gabapentin and lyrica are basically the same. The main difference is that lyrica can be taken in one dose. I'm glad to hear the gabapentin is working for you.
Thank you. I will keep the Ropinrole around as the Dr has asked just in case I have a long trip or something. It seems like Ropinirole isn't that bad if you are taking it infrequently.
Hi Vertices, welcome. I, for one, am not sure that you have RLS, or if that is the only result of your injuries. All day long involuntary leg jerks doesn’t sound like RLS to me. Sounds more like Myoclonus. Yet the DA worked which I don’t believe it would for Myoclonus. Anyways I’m not sure of the extent of your injuries, but you are young and I have great faith in the body’s ability to heal and it hasn’t even been a year since your injury. Have any of your doctors recommended an anti-convulsant like clonazepam? Are you undergoing any type of physical therapy? I think it is a good idea that you are stopping the DA and trialing Lyrica. Take a look at my profile page for my preferred treatment for RLS. Take good care.
My first injury was in 2005, and it was so bad the neurosurgeon declared it an emergency and said that I could bend over and paralyze myself. He was the highest respected neurosurgeon in the area. I needed a bilateral, multilevel discectomy to release the pressure on my spinal cord, L4-L5 and L5-S1. Bottoms of my feet were permanent pins and needles after that which after numerous opinions, I was told it was to be expected with how bad my spinal cord was. Then 8 months ago I suffered a compression fracture in T12 and the disc was jammed down into the fracture. this though they say is borderline serious enough to operate and they recommended I try to not have the operation. I have also had a silent stroke some time in the past as a fairly decent size brain infarction was found in an MRI when I was having dizzy spells over a decade ago. So there is so much wrong, it's hard to say what the cause is. They tell me it's RLS but who knows. I do have serious trouble in movies, plane rides, long car trips. It's and uncontrollable urge to tense the muscles in my leg and move it, combined the periodic spasms which jerk pretty hard. Lyrica has been great so far though. I have actually slept great the past 2 nights for the first time in forever. So far, just a 75mg pill of Lyrica every 12 hours has been awesome compared to Ropinirole, but it's only been 2 days. I have not been recommended clonazepam but I will keep that in mind should Lyrica not work out. I am not doing PT, but I will be going back to the gym soon for light stuff to get me going again. I need to lose some weight, as I am 205 lbs at 6' and 190 would be a lot better for me. I also have a nice inversion table I am starting to use again now that's its been a bit since my last injury.
Me again. You’ve probably already seen it on here, but you can’t be on anti-depressants or hormones or Tagamet or Benadryl or melatonin if you are predisposed to RLS. These substances will make the symptoms of RLS worse. These substances do not make our genetically pathetic dopamine receptors worse like Ropinirole does, but they will cause a great amount of suffering. The day you stop these substances, or they’re out of your system, is the day your RLS will go back to “normal”…?
I don't take any of those. I did previously take an antihistamine sleeping pill but I read on here that can aggravate RLS so I stopped those about a month ago when I also started taking iron, magnesium, and turmeric.
I have been taking Ropinirole for about 7 years rising to 2mg. I am now reducing (for the third time) and have reached .75 per night. Please can anyone tell me if the withdrawals I am getting are correct or is it something sinister. Acute nausier in the morning after sleepless and painful nights (back pain). Feelings of utter hopelessness during the night but feeling better as the day go's by. I have managed to procure some Gabapeantin 100 mg and would like some advice as to when start taking them or is it better to come off Ropinirole altogether before starting the gabapentin capsules (hard)
Thank you all for your support, any doctors I mention RLS to just shrug it off.
I was on 5 MG 3 x a day and didn't help. I have been on so many different medications without help. My neurologist sent me to a pain specialist who put me on oxycodone which really made a difference. He also did a temporary spinal cord stimulator for a week and it worked great for the week tested. No RLS the whole time. No mess either. Most people on this site don't mention what kind of Dr. they are talking about. Have you tried a pain specialist? I don't feel pain when having my awful times but the SCS has been working in many people. Good luck.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
RLS despair!
Update on my RLS 
Rls living hell
Restless in SD
ADHD and RLS. (Does Ritalin help RLS or exacerbate it?)
