I have had RLS for around 7 years. I consider myself to have a healthy lifestyle. I exercise regularly, never smoked or drunk alcohol, have a healthy diet and my weight is fine. My mum had RLS so possibly it’s hereditary, no one else in my family has a diagnosis. It is truly a living nightmare.
I am taking 2 x 1mg of Ropinirole per day, at times I need to take an additional 0.5mg. In general it helps my symptoms but the side effects are I get sleepy, sometimes feel sick and feel a ‘fuzzy’ feeling in my head. Am worried about this. Would like to come off Ropinirole. So looking for advice on other meds and your experience with Ropinirole, kind regards x
Written by
Y60NNEHS
To view profiles and participate in discussions please or .
Yes, HRT tends to worsen the symptoms of RLS. I’ll guess your RLS might occur during the day as well and even in your arms. You need to come off. With your doctor’s permission I would also slowly draw down on the DA. Also with your doctor’s permission I would try taking around 50mg of ferrous bisglycinate about two hours before bed on an empty stomach. Doing this relieves my RLS in one hour for one night. Since you’re on a DA, the iron is unlikely to provide 100% coverage of symptoms. In which case ask the doctor for a low dose of codeine or tramadol. Your RLS should pretty much go a few weeks to maybe months after you’re off the DA. I wouldn’t bother with Gabapentin or Pregabalin. Just get off the HRT and the DA with just iron and the lowest possible dose of a weak opiate.
You’ve done your self no harm with the HRT. You’re predisposed to RLS - which means you have a sub-par dopamine transport system. Hormones (both your own and even replacement) keep the dopamine receptors in tip top shape by “antagonizing” them. The problem is, HRT is like a tidal wave, compared to the pulsed, nano-particles of hormones that Mother Nature has engineered. The dopamine “antagonism” caused by the HRT drives you batty, even though in the long run it likely is excellent for the sub-par receptors, that are a hallmark of RLS. AND, hopefully the HRT acted as a counter weight to the DA, which is actually quite bad for RLS receptors, even though it’s so good at relieving symptoms. There you have it! You know what you must do. Go forth and conquer. And yes, keep me posted.
Hi thanks for getting in touch. Went to the GP who was very helpful and listened but had minimal knowledge of RLS. I provide her with the info from feedback here. She discussed my issues with the Pharmacist and agreed to phase me off Ropinirole and has prescribed a low dose Gabapentin. Getting bloods done next week and going back to GP. I started Ropinirole and HRT the same time - 2018. What do you think? ❤️
Hmmm. I need a more exact timeline. Your RLS started 7 years ago you said and that would be 2017. Did your doc prescribe anything prior to the Ropinirole? Anyways, it sounds like at some point in 2018 you threw both HRT and Ropinirole at the RLS, at about the same time. Does this sound right?
As I think I indicated, it’s rare to go from 0 to 100 with RLS, unless you injured your spine, went into kidney failure, or started one of the top five drugs known to push RLS to 100 overnight, including SSRI/SNRI, an anti-psychotic, Amitriptyline, HRT or a calcium channel blocker. Metformin can be quite bad too.
So that’s why I was confused and thought you FIRST started HRT, developed RLS, and then, and only then, had a DA thrown at you.
You MUST very slowly draw down on the DA. I recommend having an opiate like codeine or tramadol waiting in the wings as you draw down, in addition to the Gabapentin. People who do this have a MUCH easier time coming off the DA. Once off the DA for a few months you may no longer need the opiate - just the Gabapentin.
As I mentioned above, when I started taking melatonin, around 40 years of age, I developed full body RLS (for about 4 hours a night) and never made the connection. I read on a forum like this one to “just take some iron at night.” I did that and never looked back. I bought a kind called ferrous bisglycinate (25mg) and it relieved the RLS in one hour. One night when I ran out I bought some ferrous sulfate because that was all that was available at night. It didn’t seem to work. Next day I was back to the bisglycinate. When I upped the melatonin I had to up the iron. I was aggravated with all the frickin iron and went back on the internet and read on this forum that melatonin is bad for RLS - which had been mild and very intermittent since I was a child. The day I stopped the melatonin is the day my RLS went silent. As the years went by the RLS crept back in and I am back on the iron -56mg. It still slays the RLS. I recommend you try this as well. More happy customers:
Welcome,As RLS has now moved to your arms and you are on Ropinirole, you are suffering augmentation. Everyone taking Dopamine agonists WILL experience this.
In the USA, amongst experts, these drugs are no longer prescribed.
Nearly every member of this site has been in your situation. The Ropinirole is the problem.
HRT can make RLS worse for many, but not all.
So start with Ropinirole. Here is the withdrawal schedule. Scroll to 'useful resources'.
Withdrawal is hell, but you will never be free of RLS until you get off it.
I am now completely free of RLS on 0.4mg Buprenorphine. Many others take pregabalin or gabapentin.
See your doctor and say you need to get off Ropinirole safely.
Ask for full iron panel blood tests and raise serum ferritin above 100ųg, preferably 200ųg. That can help reduce augmentation and withdrawal symptoms.
Ask for a low dose opioid to settle the severe withdrawals you will experience at each dose reduction.
Start pregabalin or gabapentin about a month before your last dose of Ropinirole.
It's hellish, but worth it.
Go slowly. There's a useful video by Dr Winkelman for you to watch as well.
No, you don’t start reducing the DA before stopping the HRT. Y’s symptoms of RLS began 7 years ago when she started HRT. It sounds like zero RLS before then. And now you’re telling her it may not be the HRT and instead you want her to start all kinds of other drugs like Gabapentin, Pregabalin and possibly Bup. All those drugs are just as likely to give her the same side effects as she’s complaining of now with the DA. She shouldn’t go on any of those drugs and you don’t even know how long she’s been on the DA, yet you’ve decided she has augmentation. Your advice is dangerous and will condemn her to a lifetime of drug dependency she doesn’t need. You and Sue need these drugs, she doesn’t.
⁰She's on 2.5mg Ropinirole. She's had to increase the dose. The RLS has moved to her arms.Classic augmentation. Please look it up!
You are ASSUMING HRT has caused her RLS. You do not know that.
Also, once Ropinirole has caused worsening and has moved to arms, she has to get off it.
Not many people can get off Ropinirole without starting a replacement med to help settle withdrawals. Most people fail withdrawals for that very reason.
My advice is exactly as set out in the Mayo Clinic Algorithm and as clearly states by the world's top experts, Dr Winkelman and Dr Berkowski.
Your theory on HRT is your own. Some people experience RLS on HRT. Others do not.
There are many occasions when your ideas and theories have been 'dangerous' but I have not commented as everyone is entitled to an opinion.
My advice is NOT an opinion. It is based on scientific research papers and evidence.
She says she cannot remember whether she started Ropinirole or HRT first. Why do you get so worked up? She has RLS in the daytime, in her arms. She has augmentation and will get NO relief until she's off Ropinirole.
Then she can consider getting off HRT.
If she uses pregabalin to help initially, once off HRT she can THEN see how her RLS is and slowly reduce pregabalin, preferably after raising serum ferritin.
And years of Ropinirole can cause permanent damage to dopamine receptors meaning she may never be able to be med free.
As usual, Desert Oasis, I disagree with your theories.
However, you should write a research article on your theories, get them peer reviewed and printed.
I told her she has to taper off DA. No one is suggesting she not stop the DA. First the HRT, then the DA. It will make coming off the DA much easier. She shouldn’t start drugs she likely doesn’t need and will be difficult to come off of. Her RLS started with the HRT. At no point in my description of HRT has she said “but I had RLS long before then” or even “shortly before then.” How about we stop scaring people with descriptions of hell on earth, especially when they have a 7 year history of HRT induced RLS.
I’m not smart enough to make this sh-t up. All “theories” are from smart researchers. I’m the queen of copy and paste as I know you know by now. No originality here. Hey, I have nothing against estrogen. I wish I could take it myself. The loss of it is why RLS worsens with menopause. medicine.yale.edu/news/yale...
uclahealth.org/news/release... You indicated that it was not so much estrogen as progesterone that bothered your RLS. Might be time to give it another shot?
Welcome to the forum. You will find lots of help, support and understanding here.
I agree with everything Joolsg said. Let me expand on it.
First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut.
To come off ropinirole reduce by .25 mg every 2 weeks or so. Ask for a prescription of these if needed. 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 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 is less likely to lead to augmentation but that has been disproved.
The beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls the beginning dose is 100 mg (50 mg pregabalin.)] Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off ropinirole for several weeks and your symptoms have settled. After you are off ropinirole for several weeks 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 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, 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)."
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.
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...
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, oestrogen (estrogen) including HRT, dehydration, electrolyte imbalance, melatonin, Monosodium Glutamate (MSG), collagen supplements, 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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in.
After gathering as much information as you can, you will need to make some personal decisions. I can see both sides of the what to eliminate first, ropinirole or HRT. In my case, I could trace it back to the HRT causing my RLS to become severe. I know that for sure. In fact it is what caused me to start ropinirole. I was so uniformed back then. After 16 years on ropinirole I was faced with getting off the 8mgs a night I had gotten up to because of augmentation. Since I could absolutely trace the increased symptoms back to HRT, I knew I had to eliminate that first. But that is my personal experience. Some RLS sufferers do fine on HRT. I just don’t happen to be one of them, much to my disappointment!
You say that you are "eating a healthy diet" but that is your opinion and may not be the reality. You could be taken in by what 'Big Food'claims to be healthy foods but which cherry picks facts and in realtiy is far from being the whole truth. Many processed foods create systemic inflammation in the body and this inflammation can lead to RLS and many other health problems.
Exactly!!! As they say"Heart Disease and Cancer" had both!! I am on a "natural/animal base eating plan". No medication for two months. I have RL very mildly and only at night. Only problem is my sleep pattern is not too good. This is understandable as my brain has to heal from the many, many years of DA's. Nutrition is the basis of all health issues but we have been "brainwashed" into the opposite of what our bodies REALLY need by the food and pharmaceutical companies. I can see you try to help but unfortunately, it's taken as you if think you are a "Mr Know It All". When actually you do, as there have been hundreds of studies done to substantiate how eating "whole foods" are beneficial to our health and healing!!
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.
Tapering Ropinirole - the last stretch
NEW MEDICATION
Does anyone suffer from rls in their arms as well?
Medication help
Pregabalin doseage
