Hi everyone,I have been following all of you with your valuable advice for some time now but have never joined in.
Well, it's now time to ask for your personal advice. I have been suffering with RLS for over thirty years and have tried just about every medication. I have been on Roprinerole for at least ten years at 8mg daily. Yes, 8mg prescribed by a neurologist!
I have been trying to ween myself off of this terrible drug at a rate faster than suggested. So far so good. Presently at 4.5mg a day reducing at .5 every two weeks.
I also take Tramadol 50mg daily and have started Gabapentin and am up to 400mg daily. Is this too soon? I am fearful of the symptoms as I reduce the Roprinerole.
My dopamine receptors are probably destroyed and am not looking forward to the upcoming reductions of Roprinerole.
Any other suggestions?
Thank you so much.
Written by
Washguy731
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Most of what I have to say you have probably already seen. So forgive me if I repeat it. Congratulations for getting down this far. As long as it works and you are not suffering too much, continue as you are. At some point though as you get further down you will probably need to switch to reducing by .25 mg. The gabapentin won't help you much until you are off the ropinirole for several weeks and the symptoms have settled. 400 mg is not too much. I wouldn't increase it now but as you get closer to the end you might want to increase it to 900 mg.
After you are off ropinirole and it has settled, increase the gabapentin by 100 mg every couple of days until you find the dose that works for you. Take it 1-2 hours before bedtime. 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 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 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. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin) daily."
Also have you had a full iron panel blood test where you stopped taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fasted after midnight and had your test in the morning? If so what was your ferritin?
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, 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.
P.S. If you are unhappy with your doctor and want a recommendation for a new one, I may be able to give you one if you tell me the city and state you live in.
Thank you Sue for responding. I'm just concerned that as I near zero Roprinerole how will the symptoms be subsided? I expect them to be terrible. If I get up to a higher dose of Gabspentin won't that start taking the place of the Roprinerole?
Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours including in any multivitamin before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45%.
The reason not to increase the gabapentin until the symptoms have subsided is because you may end up taking more than you need and as mentioned it won't really help anyway until then.
The symptoms will subside believe it or not. It may take longer and you may need to use a lower dose or more tramadol, but you will get through it. And by subside I don't mean they will go away (don't we wish), just that they will level out.
wow that’s a high dose of Ropinerole,my neurologist told me 4 mg was the highest dose for restless legs thankfully after 10 yrs still only on 2.5 daily. Well done for cutting back. Unfortunately gabapentin didn’t work for me,good for nerve pain but not my restless legs. Hope you find a balance that works for you xx
I too was taking 8mg of ropinirole. I was on that horrible drug for 16 years. Unfortunately, the closer you get to 0 the worse the withdrawal can get. It’s as if our brain gets more and more angry at being deprived of this drug. But finally it gives up. The few weeks after my last dose was the worst time for me. Go as slowly as you need to. It took me 3 years to finally be ropinirole free. I took a year and a half break from reduction when I got down to 1.5mg. I hope you have a relatively easy time of it. Make sure to get support from your loved ones.
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