My husband who is 79 yrs old is suffering from RLS and has all his life. The last 10 yrs have been almost unbearable. Ropinirole 8mg @ day is the only drug that gave him some relief but they have stopped making them and we have been weaning off of them for 2 mos now, are down to 2mg a day for 7 more days then we're out.
He has been taking gabapentin for a yr now together with Ropinirole but they don't seem to help .... he is suffering so, so much with RLS. Please if anyone has a suggestion that we might not have tried yet we would appreciate. Thank you !
Anne
Written by
Nahfranz
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Your doctor was extremely negligent in putting him on 8 mg. That is twice the maximum dose. He should not try to reduce the 2 mg all at once unless he wants to suffer horribly. The usual recommended way to reduce is by .25 mg every 2 weeks and to let one's symptoms settle before reducing further. The last few reductions are the worse and he may need a low dose opioid to help him with the withdrawal.
Gabapentin won't help much until he is off the ropinirole for a few weeks and his symptoms have settled. How much is he currently on? After his symptoms have settled he should should increase it by 100 mg every couple of days until he finds the dose that works for him. He should take it 1 to 2 hours before bedtime. If he needs more than 600 mg, he should take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If he needs more than 1200 mg, he should take the extra 6 hours before bedtime.Most of the side effects of gabapentin 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 daily." If he takes magnesium he shouldn't take it within 3 hours of taking gabapentin as it will interfere with the absorption of gabapentin and he shouldn't take calcium within 2 hours for the same reason. Have him check out the Mayo Clinic Updated Algorithm on RLS which will tell him everything he wants to know including about its treatment and refer his doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as his obviously isn't since he prescribed ropinirole at Https://mayoclinicproceedings.org/a...
When he sees his doctor, he should ask for a full iron panel. He should stop taking any iron supplements 48 hours before the test and fast after midnight. He should have his test in the morning. When he gets the results, he should ask for his ferritin and transferrin saturation (TSAT) numbers. He wants his ferritin to be over 100 as improving it to that helps 60% of people with RLS and his transferrin saturation to be between 20 and 45. If his ferritin is less than 100 or his transferrin saturation is not between 20 and 45 post back here and we can give him some advice.
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 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, 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.
By the way it would really help us to give you advice if you would indicate on your profile what country you live in.
Hi again,You posted 2 years ago that your husband was down to 5mg and everyone advised you to get him off Ropinirole by reducing 0.25mg every 2 weeks with the help of a low dose opioid and to ensure serum ferritin was raised above 100.
You need to go back to your GP and insist they prescribe a low dose opioid like Oxycodone 10mg twice a day to help him through withdrawal.
Ask the GP to read the posts on here about withdrawal. They are unaware how dangerous and serious it can be.
Also consider vaping medical cannabis. It can give much needed sleep during the worst nights.
Ask the GP to read the RLSUK website and the Mayo Clinic Algorithm.
Do you live in the UK?
You may have to pay to see a private neurologist or sleep clinic to get sufficient help.
They have not stopped making them. In some countries it can be hard to get them. If you mean in 7 days you will be out of them (I thought you meant you would be stopping them) then I suggest you ask for .125 mg pramipexole (.088 mg in the UK) and take 4 tablets to equal your 2 mg of ropinirole and reduce them by 1/2 tablet every 2 weeks.
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