Hi everyone. I'm a long time sufferer of rls and am struggling to cope at the moment. I have lost faith in going to see doctors and specialists as my medication (ropinerole) is increased but my symptoms are worsening. With each increase my symptoms subside for a short amout of time, but then return even worse than before. I've told my doctor I don't want to increase any more because its not working so I've now lowered my dose. I don't know whether to start to just come off it. There's no point talking to my doctor as he wants to keep increasing it until I get to the maximum dose, and only then if I still have symptoms will be accept that its not working. I'm worried that am experiencing augmentation and am worried to increase and make my symptoms worse.
Any advice?
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Marley7
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Welcome to the forum. You will find lots of help, support and understanding here.
It's definitely augmentation and you need to come off it as it will only get worse.
First off check if you are on the slow release ropinirole (pramipexole). The slow release ones usually have ER or XL after their name. If so post back here as the advice will be different.
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 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 it but they are not uptodate on the current treatment recommendations. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin. 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 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 uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...
Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, oestrogen (estrogen) including HRT, 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, 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.
Hi SueOh my goodness, thank you! It's been so long since I've felt anyone actually listened to me.I did used to take pregabalin but stopped about 8 months ago as it didn't seem to make a difference. I was actually taking it for peripheral neuropathy but hoped it would help my rls. I am also prescribed clonazapam which helps, but makes me feel extremely lethargic the following day so I try not to take it too often.
I have been tested for ferratin levels before by a consultant and it was below the ideal amount so was put on a high dose of iron. I've since requested at my doctors surgery that I be tested again for ferratin but it's very frustrating. Last time they told me I'm not deficient in iron. When I explained that it's the ferratin level I need, not just iron, they said they hadn't tested for that and I had to have the blood test done again. They did the same thing that time so I asked to speak to the doctor who arranged a 3rd test and finally found out that my ferratin was low again so had iron supplements.
This also happened about a year later again, and it just makes me feel like not bothering because nobody is listening.
I have regular B12 injections as I don't absorb it through food or supplements. I wonder if it could be the same with ferratin?
My magnesium levels are normal but I've tried a magnesium cream anyway but it doesn't work for me.
I am going to make an appointment to speak to my doctor about starting to reduce my dose of ropinerole (it's not the slow release one), and request another blood test for ferratin levels and tranferrin saturation.
I practice yoga several times a week but need to be careful as overstretching aggravates my legs. I have a Therapulse which seems to work as a preventative but my symptoms sometimes start in the late afternoon/early evening, and once it starts, the feeling of the Therapulse is unbearable.
Thank you so much for listening, and for your advice. It means so much.
As Frustrated-RLS said, the pregabalin doesn't help much for RLS while you are on ropinirole.
Do you know what your ferritin was?
I don't know what iron supplements you were taking but you need at least 65 mg of elemental iron. Different ones have different amounts. If you tell me which one I can tell you how much it has.
Take it with 100 mg of vitamin C or some orange juice since that helps its absorption. Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.
Ideally you should ask for an iron infusion which will quickly bring up your ferritin and will help in your withdrawal from ropinirole, but from what you have said of your doctor it is unlikely they will approve it. Nevertheless you should ask. You can also get one privately by paying for it, but it costs around 800 £.
Clonazepam has a long half life of 40 hours which is why you are tire the next day. I would suggest Zopiclone instead but discuss this with your doctor.
I agree there's no point talking to your doctors as they clearly know sweet FA about RLS, or they would NEVER have increased the dose of ropinirole when your symptoms worsened. They should have realised you ARE experiencing augmentation and have taken the steps to treat you accordingly. Reduce very slowly, as er Sue's schedule.
Read RLS-Uk website and you'll see that you are suffering drug induced worsening ( augmentation) and need to reduce as directed by Sue.
Have these doctors bothered to take full iron panel blood tests and raise your ferritin above 100, preferably 200? Have they reviewed and replaced all trigger meds?
I suggest you file a Yellow Card Scheme report and change GP surgery or see one of the few specialists who keep up to date on research.
It may also be an idea to write a complaint letter about failure to recognise and treat augmentation and also send your doctor a link to the Mayo algorithm ( Sue has added a link) so he can learn the basics of RLS.
Did your GP warn you about the very high rates of Impulse Control Disorder ( gambling, impulse spending, hypersexuality, overeating)? There have now been hundreds of legal cases in the UK againsy neurologists and GPs for failure to warn patients.
Hopefully the tide will soon turn and the medical scandal in the UK of non existent teaching, and appalling, outdated treatment of RLS will end.
Thank you for your support! It really means a lot. I've decided to take your/ Sue's advice and come off the ropinerole, which is what I've wanted to do for so long.
I just want to say that I am so sorry for what you are going through. So many of us have had similar expediences (especially in the U.K.) and I just feel for you so much. Getting off the ropinirole won’t be pleasant but you must, very slowly, and then you can see if pregabalin or gabapentin work for you. If your first attempt at it was while you were in the ropinirole it won’t have worked for that reason. Good luck.
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