I am so glad I have found this site it has helped me in a big way in my fight against RLS.
My doctor has very limited knowledge of RLS
At one time I was on 8 mg of Ropinirole extended release with no pregabalin, my doctor knew this was over the recommended dose of 6 mg but decided to prescribe it anyway.
Through my own efforts, and with the help of my doctor, we have managed to get it down to 4 mg extended release ropinirole and 50 mg of pregabalin taken at 1 hour before bed.
My symptoms are much the same or slightly better.
I don’t get RLS at all during the day only just before bed time and waking up 2 or 3 times, with an odd sleepless night, but now using 4 mg less of ropinerole.
I have been reading on here that the first line treatment for restless legs is now gabapentin or pregabalin and to stop Ropinirole all together as augmentation takes place.
I would appreciate any advice as to whether to completely remove ropinirole from my medication and go towards either pregabalin or gabapentin and how would this be done?
I am 72 I have had RLS for the past 8 years,
I would appreciate any advice from anyone reading this.
Thanks
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jmnw15359
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Discuss this with your doctor, but I would first suggest switching to regular ropinirole since if it becomes necessary to cut the tablets, you can't do it with extended release ropinirole. You may discover, however that you then have daytime symptoms. To come off ropinirole, reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. 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. But in the long run, you will be glad you came off it. As you learned dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 75 mg pregabalin. Increase it to that 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks. 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. 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg daily." If you haven't had your ferritin checked, ask your doctor 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. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your ferritin to be over 100 and your transferrin saturation to be between 20 and 45. If your ferritin is less than 100 or your transferrin saturation is not between 20 and 45 post back here and we can give you some advice. 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...
I will discus the reduction of Ropinirole with my DR and hopefully start straight away. What short term opioid would you recommend.
A couple of things I did not mention is I have heredity haemochromatosis (iron overload) my iron levels were over double what they should be, I’ve have had 4 venesection sessions in 2022 were they have taken 1/2 litre of blood each time. The sessions have stopped now as my serum iron, my ferritin and transferrin saturation levels are all normal, I get this checked every 3 months
I don’t know if this changes any of your Recommendations from your previous reply.
Obviously I would change the recommendation that you check your ferritin. But no, it doesn't change my recommendations otherwise. As far as a recommendation for an opioid, almost any will do. I would discuss this with your doctor.
I realised earlier that the RLS started around the same time as I started taking alorvarstatin do you think there could be a connection? Do statins affect RLS?
Statins absolutely make RLS worse. Nexlizet is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS although the FDA does show it increases RLS for some people and then there is Triglide which seems safe. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, 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, 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, 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, using a standing desk, listening to music, meditation and yoga.
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.
Thanks Sue and joolsg for all you advice I really appreciate it.
I have arranged an appointment with my GP for Wednesday.
I will ask if it is possible to switch to alternative medications and start the change from extended release to regular Ropinirole with aim of reducing to 0 over a period of time.
Sue do you recommend starting at my extended release dose of 6 mg?
And is it possible to advise some sort of timescale or program as to what a reducing dose of ropinirole and increasing dose of pregablin should be .
I am so happy I can contact people like yourselves through this website who are genuinely interested in your condition and will do everything they can to help.
Thanks again I will keep you updated with any changes.
I thought you said you were currently at 4 mg, not 6 mg? And I am confused about your question of asking for some sort of timescale or program as to what a reducing dose of ropinirole and increasing dose of pregabalin should be as I gave you that in my answer above.
Sorry just checked my prescription got a bit confused I am presently on 6 mg not 4 mg extended release ropinirole and 50 mg pregabalin.
What I was trying to ask you Sue was when I start reducing should I start at 6 mg regular ropinirole same dose as my extended release, or do you think a lower dose.
If I do start at the 6 mg regular ropinirole should I take them all at the same time 1 to 2 hours before bed or spread the dose
At the moment I don’t have any problems during the day.
The maximum recommended dose of Ropinirole is 4mg, not 6mg. Sadly, most UK doctors are unfamiliar with dopamine agonists and that they actually feed the disease and worsen the RLS. They overstimulate the D1 receptors which scream out for their share of dopamine. This causes the RLS to become more intense and to start earlier in the day and move to other body parts.You have done well to get down to 4mg. As Sue advises, switch to normal Ropinirole and start reducing by 0.25mg every 2 weeks. Sadly, augmentation will continue and it doesn't stop until you're off all dopamine agonists.
It's better to do it now and make the switch to pregabalin because withdrawal is hellish for most people and the older you are, the more difficult it can be.
What happened 8 years ago to cause the RLS? Have you had your iron levels checked? Maybe your serum ferritin dropped and triggered RLS. Did you start any new medications , like anti depressants, anti histamines, statins, beta blockers or PPI meds?
I have heredity haemochromatosis (iron overload) my iron levels were over double what they should be, I’ve have had 4 venesection sessions in 2022 were they have taken 1/2 litre of blood each time. The sessions have stopped now as my serum iron, my ferritin and transferrin saturation levels are all normal, I get this checked every 3 months.
I take 20mg atorvastatin, 75mg aspirin, 20mg omeprazole, 5mg ramipril.
I’ve been taking the statin for 8 years the rest have been added over the last 7 years.
Is it possible the statin might have triggered RLS.
I have Just thought about this now I got RLS after I started the statins.
Would it be advisable to come of statins for a while to see if symptoms decrease?
You were clearly put on the statins for a reason. So you need to see your GP and explain that statins, omeprrazole and ramipril ALL trigger or worsen RLS.That could be why your RLS started 8 years ago. There are some statins that are not as bad at triggering RLS.I think ChrisColumbus has listed one that is fine for him. Omeprazole could possibly be replaced by magnesium based antacids and a really good probiotic like Symprove. The High blood pressure meds are also clearly needed so you will need to have a long discussion with the GP and your Heart doctor to see if there are safe alternatives or any other way of reducing the cholesterol and High Blood Pressure.
Unfortunately, there are many medications that trigger RLS and you often need to tread a fine line to find what keeps your Heart &BP
healthy and your RLS tolerable.
You could try asking Dr Buchfuhrer, a US expert on RLS. If you list all your meds, explain that RLS started when you began the Statins and High Blood pressure meds and the PPI inhibitor. He may have some useful suggestions. He replies to emails quite quickly and without charge. His email is:
Just a minor caution. Although at 75mg it should be okay.Myself and many others have had almost mania type side effects from Pregabalin. Including insomnia, restlessness, agitation, euphoria and very erratic behaviour. On such a small dose I very much doubt you would have these but do keep an eye out or ask someone to keep any eye on you if this is possible.
I don't want to scare you but it is a powerful medication and should be treated with respect. Also never just stop taking it without tapering down. Although again at 75mg this won't be too much of an issue.
Best of luck. I was on it for nerve pain so can't advice about RLS.
Several years ago, I was taking a high dose of Ropinerol, 12 mg. Extended Release, prescribed by a neurologist. I was also on 900 mgs of Gabapentin. When I went into severe augmentation, he just kept increasing my dosage up to 24 mgs, and I continued to get worse. With the help of the folks on this website, I titrated off Ropinerol and Gabapentin, and transitioned into Pregabalin and Tramadol.
Whatever you do, Do Not just stop taking Ropinerol. You will go into withdrawal immediately. I titrated off it slowly, with the help of my pharmacist and Primary Care doctor. You need help doing this as the withdraw from Ropinerol is as bad as an opiate from my experience.
I left my neurologist, and with the guidance of my pharmacist and doctor, I very slowly got down to .25 mgs of Ropinerol (can’t remember if I was taking it once a day or three times). But by then my augmentation was getting so bad, on my own, I totally quit taking Ropinerol. Probably not the best decision, but I couldn’t stand it. I went into complete withdrawal immediately—sweats, shaking, no sleep, RLS all over my whole body, but it was better than augmentation.
I then found a real RLS specialist in a Movement Disorder Clinic, who prescribed Pregabalin, 100 mg three times a day and 100 mg of tramadol, three times a day; taking both at the same time every day: 8 AM, 3 PM and 10 PM. It took a week or so for it to take affect, but when it did, the relief was amazing—I stopped experiencing RLS symptoms almost entirely. I finally felt like a normal person. I was sleeping through the night with no RLS during the day, as long as I stayed on my prescribed daily dosage without fail.
In my opinion, Gabapentin is an inferior medication compared to pregabalin. They they are both Alpha Legand medication’s, but Pregabalin is much more effective. Tramadol is a mild opiate. That medication is primarily for the inflammation I get in my ankles and knees when I over extend my walking or any daily activity. I’m 75 now and have been on this combination of medication for, as I said, 7 years. I am convinced that knee and ankle joint inflammation is what triggers my RLS symptoms.
I have hardly any RLS anymore. Sometimes I will get a little of that uncomfortable sensation back in my legs, but again only when I have over exercised. Or if I forget to take my medication then it comes right back.
A few years ago, I discovered Magnalife’s Relaxing Leg cream. If I start to feel my RLS coming back at night in one ove or the other from over doing that day, I apply this delightful smelling, non-greasy cream all over my ankles, my lower leg, and knee (back and front). And my symptoms just go away. This application will usually last through the whole night.
Medical schools have got to start teaching doctors how to deal with RLS, and especially how to stop prescribing ropinirole.
WOW - I am impressed! Coming off 24 mg of ropinirole, 6 times the maximum dose for RLS and equal to the maximum dose for Parkinson's can't have been easy. I would have sued the doctor who prescribed it.
I agree about Magnalife’s Relaxing Leg cream, it has helped me a great deal I believe. I was nearly off Repinrole by the time I purchased it and I changed so many things, not sure which helped more. I was on a very low dose of Repinrole so coming off wasn't near as hard as it is for others. I use it every night and morning, I also have Chemo induced neuropathy and it helps me with that as well.
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