I’ve got a conditions called IgaNethropathy which is leading to a low Kidney Function, Ido suffer now with restless legs I’d say it’s my constant companion! I’ve been treated with 2x.5mg Ropinirole which does help but of course I can only take these i the evening but Restless Legs can strike any time usually lates afternoon and then again in the evening. I’d really like to be able to sit and read or just even watch TV but for now at least that’s a long forgotten pastime.
I would be interested to hear what other treatments there are? I have started acupuncture and I do think that has worked a little.
I hope at some point it will pass or things might change any advice or info would be appreciated
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Signmaker1969
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Welcome to the forum. You will find lots of help, support and understanding here.
It sounds like you are suffering from augmentation. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. Unfortunately that means you need to come off it.
Ropinirole is no longer the first-line treatment for RLS, gabapentin or pregabalin is. It used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. Have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it. On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) Start it 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 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 divide the doses on pregabalin) Most of the side effects of gabapentin or pregabalin 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 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)." 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). 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...
The above is the usual advice. However, because you have low kidney function Gabapentin and pregabalin doses should be kept low and you need to be carefully monitored for adverse effects, such as mental confusion and falls Doses should be adjusted for renal dysfunction. In patients older than 65 years, initial daily dose should be reduced (gabapentin, 100 mg; pregabalin, 50 mg) since they are eliminated primarily by renal excretion, adjust the dose in adult patients with reduced renal function. also Kratom and other opioids can cause adrenal fatigue Ask your doctor to test all adrenal hormones, particularly testosterone and DHEA.
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, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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, fennel, 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, CBD, 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, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse
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, 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.
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.
That's a lot to read but very grateful for your response.
Meds wise currently I'm on
Sertraline 50mg
Dapagliflozin 10mg
Atorvastatin 20mg
I'm also on felodopine 5mg
And ramipril 10mg but with the consent of my renal consultant I'm currently not taking them so see were my blood pressure is as I feel the 10mg made the RLS worse or more intense
Kidney disease triggers RLS sadly. The most important thing is to ensure your brain iron levels are high and that serum ferritin is above 100, preferably 200.Your doctors should NOT have started yoi on Ropinirole because it WILL lead to increased, very severe RLS, known as Augmentation. That's why the top RLS experts don't prescibe dopamine agonists.
In the UK, RLS isn't taught at any stage in medical training, so here, doctors aren't aware of the dangers of Ropinirole and Pramipexole.
You're also on meds that trigger/worsen RLS. You would benefit from seeing a knowledgeable doctor who can get you off Ropinirole and review all your trigger meds to see if they can be safely replaced with alternatives.
Sertraline is a common trigger. All antidepressants trigger/worsen RLS. Trazodone is a safe alternative.
Statins and blood pressure tablets are also triggers, so would need review.
There are a few doctors in the UK who know about RLS.
Dr Jose Thomas at Gwent Sleep Clinic in Wales and Professor Matthew Walker at Queen Sq in London. Both will do phone consultations.
In the meantime, read everything you can on RLS. Join RLS-UK. Look at RLS-UK website.
Read the Mayo Algorithm.
The more you learn, the more you can direct your doctors and you'll be able to stand your ground when they suggest switching to another dopamine agonist.
You are on 3 medicines that make RLS worse. Sertraline is one of them. The only safe anti-depressant for RLS in the UK is trazodone which also treats anxiety and insomnia.
Atorvastatin is the 2nd one. Nexlizet (Nustendi (UK) 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 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.
The third one is felodopine. Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. And then there are the ace inhibitors such as Zestril (Lisinopril, Qbrelis, Prinivil) and Perindopril (Coversyl). Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Clonidine can actually help RLS. Discuss these with your doctor.
I’m sorry you are going through this. I have had RLS for over 30 years and with my MD’s willingness, I’ve played with my meds to come up with what works for me.
Ropineral ER 4mg - 1:00pm works best for me
Ropineral 0.5mg -8:00am, 1 00pm, 5:00pm, 9:00pm
Gabapentin 300mg -9:00pm
I try to keep a constant even blood level of Ropineral throughout the day. I’m aware that Augmentation might be in my future, but for now I’m stable.
And yet, I only get 5-6 hrs. Sleep a night and if I try to nap the RLS kicks in immediately. I do take Marijuana Gummy’s at night, helps some. And of course Magnesium, B vitamins, Iron (watch for constipation) I Google a lot and am always looking for new RLS info from legit sites-Mayo Clinic, etc. if the Ropineral makes you sleepy during the day, I’d keep at it and it seems this side effect lessens as your body adapts.
Good luck. Hopefully some drug co. will eventually offer an effective Rx.
Thanks for the info. My RLS kicks in 2-3pm. And then goes away before returning. I suspect the augmentation may have kicked in. Very difficult to get any opinion from the medics really.
You are already augmenting - sorry to be the bearer of bad news. You are taking one and a half times the maximum amount and it is still not controlling your symptoms since you only get 5 to 6 hours sleep at night and you can't take a nap without RLS symptoms .
The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen.
I would strongly suggest you get off them. Since you are familiar with the Mayo Clinic algorithm you are aware that Ropinirole is no longer the first-line treatment for RLS, gabapentin or pregabalin is.
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. However do not cut the ropinirole ER tablet as they are formulated as a 3-layered tablet with a central, active-containing, slow-release layer, and two placebo outer layers acting as barrier layers that control the surface area available for drug release. You will need to change to the regular ropinirole. 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.
On the gabapentin normally the beginning dose is 300 mg and normally one would start it 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 100 mg 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. Most of the side effects of gabapentin or pregabalin 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 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)." Since you take magnesium (even in a multivitamin), take it at least 3 hours before or after taking gabapentin 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 .
I know you said you were taking iron but have you had your ferritin checked? If so what was it? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 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.
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, eating late at night, estrogen including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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, fennel, 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, CBD, 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, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga. Keep a food diary to see if any food make your RLS worse.
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.
Be wary of increasing the dose - my daughter died after taking Pregabalin at a higher dose - what the GP didn't see in her file is that she suffered from urine retention and hadn't peed much that day so all the medication, because she was prescribe lots - I believe to get her out of the doctors way had built up in her system and her post mortem has showed she suffered a fit and bit her tongue so her face was covered in dark blood because she was alone sitting in her Livingroom, so not to disturb her family meant there was no-one there to deal with it and she was found at 5.30 am on her sofa, dead for a long time as she had rigour mortis We all knew, even my grandchildren when she had taken her pregabalin because she became sleepy and had slurred speech and didn't know much of what was going on around her but we were being told by her that this was a prescribed drug so that it must be okay. She didn't take an overdose what was prescribed with no heed to her medical file cause it - please be careful this is not a nice drug!!
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