So I’ve had restless legs syndrome for over 25 years and I had been on ropinirole at least that long. I was up to 3 mg an evening on the ropinerol and it was getting worse. when I was able to meet with a doctor here in California who is very familiar with restless leg syndrome.. I am now on oxycodone 5 mg two tablets in the early evening and then later on when I go to bed. my problem is I still feel the restless legs even earlier in the day when I never felt it before I also feel it in my arms as well . I feel as though I’m always tired which will initiate that restlessness feeling for me throughout the day. I feel pretty miserable without rest and I don’t know how I will have a normal social life. it is so discouraging to feel like this the majority of the time. the restlessness used to just be in the evening and if I took my pills eventually that would work most of the time. when things got worse that’s when I sought out help from a Doctor Who knows this disease. . I went off( per Dr.s order ) the ropineral because of everything I read and I know it has long term side effects but for the most not was working as well and I was getting it earlier and earlier. I am afraid to increase my dose of oxycodone because I do know it is a very addictive type of medication. I went cold turkey off of the ropinirole but it has been two months now. I was hoping things would feel better. I am pretty miserable.
trying to be normal : So I’ve had... - Restless Legs Syn...
trying to be normal
I find it odd that you are on 3 shortacting (6hrs) capsules a day.
Oxy is best taken throughout the day, on an even basis. This avoids the addictive potential.
Assuming you have sorted the iron and trigger issues, then opioids should work well.
I'm in a similar situation, and am now at Oxycontin 10 twice a day, and Oxynorm 5 mg once a day to make up for the fact that I have a fast metabolism and cycle medications faster than many people.
I presume you are aware of Dr Mark Buchfurer, who operates in CA, and would be the foremost RLS expert in the world -- possibly!😝
It is possible that you are still suffering from post DA withdrawals, even 2 months out.
Good luck.
Thank you for your response. Yes my Ferritin level was checked and is adequately above 100. He had first tried me on methadone but I had a hard time with the effects the next day making me feel too lethargic to drive and I would still wake up with breakthrough restlessness at night. After several dose changes that is the reason ( I presume) for the short acting oxycodone. I was curious about whether or not I may still be feeling the withdrawal from the ropineral or if this is just how it is for me.
I have had RLS for 57 years, got worse as I got older. I have been on medication all this time. What I have discovered that being on Ropinerole for a long time you get augmentation, so I go back on pramipexole and when that stops working go back again on Ropinerole it has worked for me. I have been free of RLS for 4 months for the first time in my life. Hope it will work for you.
Hi - I’ve not heard of anyone cycling in this way before - I presume it’s ok to swtch between them ? I notice my mum was on pramiprexole and was switched to ropinerole. I’m desp to get her off ropinerole but she’s elderly and frail and wondering if this could be another option. Are you having other side effects ?
hello, this is what my doctor is doing with me, I started ropinirole 0.25mg after coming off pramipexole which was started at 1 x 0.088mg per day, I ended after around a year taking 5 a night with no relief so now money ropinirole which already I'm taking 3 x 0.25 which is making g no difference to me
Your doctor was remiss in taking you off ropinirole cold turkey. You should have been weaned slowly off the drug. That is probably why you are still having symptoms.
Withdrawal symptoms can last months, especially if you went cold turkey from 3mg.As Madlegs says, oxycodone is short acting and you may be experiencing mini opioid withdrawals as the oxycodone wears off and RLS is a symptom of opioid withdrawal.
You might be better switching to Oxycontin and take it every 6 or 8 hours over the 24hr period.
Opioids at low dose for RLS are not usually addictive if there's no history of abuse. Dr. Winkelman's opioid study for RLS confirms this.
Also make sure your serum ferritin is above 100, preferably 200 as that can help augmentation and withdrawal symptoms and the majority of patients show improvement by raising levels.
Hello, sorry to hear about the symptoms. I have had RLS for a long time, and am taking 5 mg of oxy by 5 pm most days. I also take 18 mg chelated iron before bed. Was starting to have breakthrough moments of symptoms and didn’t want to go up in oxy due to preexisting tinnitus.
My husband and I took a very short transcendental mediation course (three days over a few hours) and what a difference it’s making! When you mentioned fatigue, I thought to bring this up.
I meditate for 20 minutes twice a day. It gives my body and mind the rest I so desperately need. Most days, I nod off during the afternoon meditation. The instructor said to let the body do what it needs to do, so if I sleep, I sleep. That sleep is saving my life.
That awful draining soul sucking fatigue is no longer such an issue.
I do have an appointment with Dr. Buchfuhrer in October to explore my future medication options. I’m 57, and know eventually will have to shift the meds.
I, too, have an appointment in October with Dr. Buchfuher. I need his advice.
Hi!! I am in New Jersey, any chance you could ask the doctor to recommend an RLS doctor here in Northern Jersey ( my town is Wayne) I’d be willing to drive no more then an hour. Dr Arthur Walters was my RLS Dr but relocated to Vanderbilt Institute over 10 yrs ago. I’ve been just getting my pramipexole from my primary doctor, my opioids from pain management doctor. Long story short (part of my story is on this site) for the last few months my RLS has been showing its ugly head to often then not! I’m at my wits end. I am turning 59 next week my body just can’t do the dance anymore!! Older u get it seems the harder it is to fight this demon!! I am really hoping you’ll be able to ask and he’ll tell you. He probably knows of Dr Walters he is one of the very first doctors who researched etc RLS. You can look him up. Unfortunately I don’t know another and rather have recommendation from a doctor who knows about RLS.
Just a quick note: I had a spinal fusion at L4/4 in June 2021, it’s been hell ever since! I feel like it woke a sleeping giant!!!!
PS I’m sorry I wrote all about me…. I pray in hope you get your answers and help you obviously need. This dis- ease is horrible in my opinion not enough doctors and medical staff are educated/schooled in this dis -ease. It became apparent to me in hospital bc no one knew what to do and most either just “heard” of it or knew nothing about it!!! That is so disheartening. Good luck to you my night walking friend
The RLS Foundation has a list of doctors at rls.org/treatment/find-a-he... I just checked and they don't list any in New Jersey, however they mentioned in their newsletter that they have gotten the names of 50 doctors at a Sleep conference recently so they may not have added them yet so you might check in a few weeks.
Thank you very much Sue! You are a wealth of information here!! I am greatly appreciative for all!! I will check the doctors again I guess in a few months? Or maybe I can email and ask?
I couldn’t agree more . It’s so frustrating that so little is known about this disease and most doctors and medical personnel don’t have any idea about what to do. And Yes it’s a horribly frustrating thing. I am fearful for the time when i would be hospitalized for something.
Hello. You don’t say if your dr is Mark Buchfuhrer. Sounds like the experience I had him. He told me to stop Ropinirole cold turkey and replace with methadone. I had been on Ropinirole for 16 years and was up to 8 mg per night. I augmented terribly. I tried his plan but after 6 weeks on methadone I got extremely sick. I had to return to ropinirole but at a lower dose. I eventually tried again to go cold turkey under his supervision. I tried oxytocin and morphine sulfate. I got very sick again. He kept telling me to take more opiates as they weren’t covering my RLS. But I couldn’t because I was too sick. So back on Ropinirole at even smaller dose. From there I decided to reduce dose of ropinirole slowly. I eventually did it but it took time. I guess what I’m trying say is that this process is very difficult and there are no guarantees of when the process ends. Unfortunately it can take more time and effort than we may hope. Don’t give up. You will find a way to rid yourself of that horrible drug.
That's terrible - he should certainly know better than to tell anyone to come off ropinirole cold turkey.
It’s what Dr B does if it was him , gets his patients to go cold turkey and prescribes methadone as it usually takes care of the withdrawals. But seems this time it hasn’t worked. For being sick on the opiates a anti nausea med should have been suggested Zofran is the RLS friendly one to take.
Yes - that's the one I took after surgery and it worked very well.
See my response to Elisse2.
Yes, he did prescribe Zofran. It worked to some degree until the opiates built up in my system and I became what I refer to as poisoned. Weeks of chronic nausea, cold sweats and an inability to stay still even though I was so sick. So I would just lay there, rock back and forth and cry. No amount of Zofran helped. So I had no choice but to stop the methadone. I went through this again a couple years later when I consented to try the process again. I can only handle opiates every once in a while at a very low dose. I learned this the hard way!
I understand, i have low tolerance to all the meds and they eventually turn on me as in side effects i have gone from taking Tramadol to Tramadol/ paracetamol to now cocodamol which is also giving me problems. Hard to take a med let alone increase it when it makes you ill.
Yes it is Dr. B, I have full faith in him but I’m we’re still trying to work out the correct way to find some relief ( I have definitely found some relief since the ropineral was working less and less.) The Oxycodone is working ok and he is very available in case things need adjustments. I was just taken back when I went cold turkey off the ropinirole and was not sure when those effects would fully go away. Thank you everyone for your input.
Ask your doctor if you can try the rotigotine transdermal patch. It lasts 24 hours.
Yes - but that is just putting her back on a dopamine agonist.
In all your responses- how come no one is taking gabapentin? I take 1500 mg In divided doses and it’s been working very well. Have had this f-ing disease for 40 years and it’s made me very crazy and depressed at times. The gaba was prescribed 8 years ago and worked well until a year ago at 900 mg - had to increase to 1500 recently. I also take one iron tab with one vitamin c daily. Good luck all of you- what a shitty club we are all in but thankful for the support and understanding of this community.
I had similar problems, solved by taking Ropinirole 24 hr Slow release. - up to 6 mg
Are you still taking that? 6 mg is one and a half times the maximum dose.
I saw a sleep/RLS consultant some years ago who did suggest 6mg, even 8 of 24 hour slow release Ropinirole (some people have to take 24 mg/day)!. The GP's are not over keen, but as they tend not to know very much about RLS have gone along with it. 4 mg is the recommended dose.
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