My 83 year old husband has had RLS for many years. He reads these comments but doesn’t respond to them so I am responding for him. He was prescribed Gabapentin early on which worked for awhile. He has been on Ropinirole for a very long time. The RLS spread to other parts of his body and occurred during the daytime. Consequently he was needing to take Ropinirole more often and the side effects greatly affected his quality of life. About a month ago he requested trying extended release Ropinirole. He takes it once a day and it has been effective in keeping his RLS under control without the side effects. We are praying he does not experience augmentation.
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Farmboy1
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He has already suffered augmentation. You've said the RLS has moved to other body parts and started in the daytime AND he's increased the dose.
All classic signs of severe augmentation.
Adding gabapentin while taking Ropinirole is a waste of time. It won't help the severe RLS.
If your husband ever wants to be free of severe RLS, he will have to get off Ropinirole.
Switching to long life Ropinirole used to be a standard protocol to avoid augmentation. However, experts no longer do this. Augmentation will happen again. It's simply a matter of time. And it is far more difficult to get off the long lasting version.
I suggest you read all the posts on augmentation and dopamine agonists and help your husband get off Ropinirole. Swap back to normal Ropinirole and reduce by 0.25mg every 2 weeks.
The usual advice on iron levels applies. Get the morning, fasting,full panel iron tests and ensure serum ferritin is above 100ųg/L. If your GP refuses iron tests, you can consult lawyers, as that is a breach of duty/negligence.
Gabapentin won't help until around 4 weeks after the last dose of Ropinirole is stopped.
Ask your GP to read the RLS UK website and the Mayo Clinic Algorithm on RLS. NHS and NICE guidance is outdated.
He augmented on ropinirole. 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.
The problem with extended release ropinirole is that he is taking twice the dose that it says because for example if it says .25 mg ER it is equivalent to taking .25 mg twice a day, so if you reduce by .25 mg of the slow release tablet you are in effect reducing by .50 mg. And if you cut them you will be taking .50 mg all at once so you can't cut them. Instead he should go back to the regular 25 mg tablets and take twice the dose he has been taking. Then because he is suffering from augmentation he needs to come off them because it will only get worse.
Ropinirole (and pramipexole) are no longer the first-line treatment for RLS, gabapentin or pregabalin is. 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.
To come off ropinirole, reduce by .25 mg every 2 weeks or so. He will have increased symptoms. He may need to reduce more slowly or with a smaller amount. He should wait until the increased symptoms from each reduction has settled before going to the next one. He will suffer and may need a low dose opioid temporarily to help out with the symptoms especially as he nears the end. Some have used kratom or cannabis temporarily to help. But in the long run, he will be glad he came off it. Since he doubled his dose, the first reductions may be easier but the last ones will be the hardest.
How much ropinirole was he on before he switched to the ER version?
I don't know why the gabapentin didn't work for him. It may be because he didn't take enough or didn't take it in the right way, so here is the normal way it is taken:
On the gabapentin, the beginning dose is usually 300 mg. He should start it 3 weeks before he is off ropinirole although it won't be fully effective until he is off it for several weeks. After that increase it by 100 mg every couple of days until he finds the dose that works for him. Take it 1-2 hours before bedtime as the peak plasma level is 2 hours. If he needs more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If he needs more than 1200 mg, take the extra 6 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 1200 to 1800 mg of gabapentin" If he takes 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 he takes calcium don't take it within 2 hours for the same reason.
Has he had his ferritin checked? If so what was it? 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 his test in the morning before 9 am if possible. When he gets the results, ask for his ferritin and transferrin saturation (TSAT) numbers. If his ferritin is less than 100 or his transferrin saturation is less than 20% ask for an iron infusion to quickly bring it up as this will help his withdrawal. If he 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, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, 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 he is 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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in
Thanks for the information and recommendations. This forum is wonderful. He is having welcomed relief since starting on ER Ropinirole so the idea of tapering off is not a welcome one for him. I understand the rationale and he was told this by a new neurologist he recently saw. None of the doctors he has seen know much about RLS nor do they seem interested in learning about it even though informed about Mayo Clinic algorithm. His Ferritin and Transferrin levels are within the normal range. We live in the US. He has other medical conditions as well. The only meds he takes are Levothyroxine and Durasteride. He recently was prescribed Trazadone for sleep which has not exacerbated his RLS yet.
Of course it gives welcome relief. He doubled his dose by switching to the extended release version if he got the same amount. But he is just putting off getting augmentation again and it won't take too long. It is easier to come off it when one is not augmenting. How much is he taking?
Since you live in the US it is easy to switch to a doctor who knows more about RLS. What city and state do you live in? I might be able to give you the name of a doctor.
Ask his doctor what his ferritin is. What is normal for others is not normal for those of us with RLS.
4 mg ropinirole is the equivalent of 8 mg regular and 4 mg regular is the maximum dose for ropinirole so he is on twice the maximum. Since he has only been taking it for a month he could probably by switching to regular ropinirole go down more quickly to 5 ropinirole which should still control his symptoms. If he doesn't augmentation will definitely catch up to him and it will take much longer for him to come off it and he will suffer much more.
Yes his iron saturation is on the high side but not enough to worry about, It just means he shouldn't take iron probably even in a multivitamin but if he has been taking the multivitamin for a long time, it is probably OK.
I definitely suggest he switch to a doctor who knows a lot more than his does
Good initiative of you to write a post. We are here to help by sharing knowledge and experiences. As you have followed this forum for a while you may have learned about the danger of augmentation associated with all dopamine agonists (ropinirole, pramipexole and rotigotine). The signs are earlier onset of symptoms, symptoms returning sooner after having taken your medicine and symptoms spreading to other body parts. From what you write it appears that your husband already suffers from augmentation. Although switching to an extended release form of ropinirole ( in your husband’s case) used to be an accepted and even advised approach, the current view is that this most likely only prolongs the agony. Your husband most likely will have to eventually come off the ropinirole to get the symptoms back to ‘normal’. It is not a welcome idea, I suspect.
Please prepare and read. Then discuss with your husband’s doctor. Hopefully s/he will listen and support you. Iron status and review of other, potentially worsening medicines first. Then decide on the alternative medicine (gabapentin or pregabalin, or an opioid) and then start the process of tapering the ropinirol (your husband will have to return to the normal form) while building up the alternative medicine.
Good luck with this process. Keep us posted. We are here to offer support.
There's a great chance he may need a low-dose opioid regime to get off the DA. If you can find a doctor willing to prescribe it, he may avoid months of needless suffering.
I am seeing a neurologist next week to start the withdrawal off pramipexole. I have been on it for years. The augmentation does not do away. I found it may disappear for a bit but it returns with a vengeance. His iron levels may be in the "normal" range but not good enough for someone with RLS. From this site and the Mayo clinic Algorithm and watching videos referenced by people here, it is not enough to be told he is in the normal range. You need numbers. Those numbers will tell you if his levels are high enough for someone with RLS. I struggled with accepting I was augmenting and needed to give up pramipexole. I am terrified of this, BUT, more appalled at facing more years living through the hell of pramipexole. Not just the increase level of RLS but the sudden onset of sleep....driving a car and you are suddenly on the wrong side of the road heading straight for a pedestrian or other vehicle. Never knowing if and when this will happen again so now you cannot drive on your own anywhere or drive safely at all. Loss of impulse control....I cannot live this way anymore. It will not be easy, BUT, this group have been incredibly supportive and educational and have lived this and I find strength from this to be tackling this. Good luck to you and your husband and keep us updated. You guys can do this.
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