It's been years since I last wrote here as my RLS is quite mild. Few years ago it was quite under control even mild episodes. I used to take 0.25mg of Ropinirole (Adartel) in case of episode and it would work very well.
I moved from London to Finland few years ago, and last year I started taking Escitalopram for anxiety. I first started with Escitalopram (Actavis) 0.5mg for the first weeks, then after 3 weeks I could increase my dosage to 10mg. Meanwhile, for my RLS they gave me Pramipexole (Orion) 0.18mg. I hate it. As I normally take medication when I have legs episode, I'd take it quite late, and it affected my sleep, I couldn't fall asleep anymore, plus it talks very long to stop my legs.
I also changed some point the Escitalopram pharmacy as I wanted a more sustainable package, and I tried the one from Orion pharmacy (before it was Actavis) and the formulas were different from each other. Escitalopram from Orion pharmacy made me have rls episodes every other day, which is very atypical in my case.
I went back to the doctor, got back to old Escitalopram Actavis and so far it does have a difference in the formula, so my rls is quite back to normal, being mild again.
I also requested Ropinirole instead of Pramipexole and they gave me Ropinirole from KRKA pharmacy, 2mg.
And the few times I took it, again just when I start feeling my legs quite late night, the effects is quite instant on my legs. However, I felt a bit dizzy and as my body was tingling for a while. And, I felt asleep straight away after I took it but I woke up 2hrs after I took it, feeling this symptoms I mentioned plus a sense of awakening.
I wonder how the Ropinirole from Adartrel (UK), 0.25mg would make me fall asleep as a baby for the full night and now, a higher dosage but different pharmacy, is messing with my sleep.
Plus, I'm testing if Primrose Oil capsules can help and I'd love to try out other sort of medications which won't give me too many side effects as I worry (and I'm we all here) the effects in the long-term of taking these strong meds.
I hope that my statement can also help other people here with the same problems =)
Thanks in advance and I hope that everybody is coping well with our RLS
Written by
kika82
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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 this means you need to come off it. Luckily you just started it and have already stopped taking it. Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. The beginning dose is usually 300 mg gabapentin (75 mg pregabalin).It takes 3 weeks before it is be fully effective . 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. 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 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. 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) daily."
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 atHttps://mayoclinicproceedings.org/a...
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 when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and 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. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.
Escitalopram is known to make RLS worse. Safe antidepressants are Wellbutrin and trazodone.
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, 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, 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.
Thank you so much SueJohnson! That's extremely helpful! I've been tracking my iron level but haven't been instructed to don't take the supplement before and to also check the other iron compositions. I know my deficiency is in the transferrin, but the doctor here in Finland are quite reluctant to ask for specific blood tests!
I'll investigate all this going through your list and I get back here for some updates.
Hi, I too was taking Ropinirole from Adartrel (UK), 0.25mg before bed and it would diffuse any symptoms. There is currently a manufacturing problem with Adartrel and none of my pharmacies have it in stock. The Pharmacy could only give me (Ropinerole) 0.5 mg tablets (which I was to take half of) it was a different manufacturer (was in a brown medicine bottle so I don’t know the name) and like you it didn’t work the same. I had to take the full 0.5mg. But even so just didn’t feel it worked the same. We now can’t get any low dosage Ropinerole at all due to the manufacturing issue and I’ve been put on 0.88 pramipexole. This has worked but takes much longer at night to come into effect and like you makes me feel really light headed and I also have been waking feeling the symptoms later during the night. I really hope the Adartrel tablets become available again as this was working well for me. X
That explains so much!! And what makes me more angry is that I was obliged to buy a box with 100 pills of Ropinirole (due to the health system here in Finland) and now I'm as unhappy with it as I was with Pramipexole. I think we should follow the recommendations given above, check out a good magnesium, iron and ask for a detailed iron test. I can advice you to try Primrose Oil in capsules (Boots) and a magnesium cream which makes hot and cold when you start feeling your legs. And fingers crossed Adartel will be back soon!! xx
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