Having started with Ropinirole in January, I started to experience augmentation last month. Saw GP earlier in this week and they suggested 2 day reduction/elimination in/of Ropinirole and (seemingly on my suggestion based on advice on here…and of course the NICE guidance has changed) they have prescribed Pregabalin after seeing what happens in short wind down from Ropinirole.
First day after very short ‘wind down’ I felt better but the following night was worst ever (last night…legs only) so took first Pregabalin around 1am…eventually slept through to 9am.
I will see what the new Pregabalin regime brings longer term.
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PeterCH
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I need to check, but the GP said 2 days on half dose was fine. I said I had read (here) that it should be longer, but she said 2 days was sufficient. I don’t know if that was ‘ignorance’ or that I had only been on them for 2 months or so.
Pregabalin takes 3 weeks to be fully effective and even then won't be fully effective until you are off ropinirole and the withdrawal symptoms have settled.
As your GP has never studied RLS or been taught about augmentation and dopamine agonists- you should follow the advice of the patient experts on here.We see medical ignorance daily. They haven't got a clue.
Show your GP the RLS-UK withdrawal schedule set out under 'useful resources'.
And the iron therapy page.
We need to take every opportunity to educate GPs and neurologists.
Sorry I forgot the period. Bumble34 is correct. I edited my answer. It will take you 8 weeks but 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.
Is Pregabalin more effective than Pramipexole, without the negative side effects of the Pramipexole? I tried Pregabalin for three days, but it didn't work, although I'm willing to try again.
Welcome to the forum. You will find lots of help, support and understanding here.
Pramipexole is no longer the first line treatment for RLS. Gabapentin and pregabalin are. You are probably taking it for your Parkinson's.
You should ask your doctor about Rasagiline (Azilect). Rasagiline is used for Parkinson's and has been used to treat RLS. It is not a dopamine agonist. The hope is that Rasagiline, because it prolongs the effect of existing dopamine, instead of producing more, will not come with adverse side effects. Intense exercise can slow the progression of Parkinson's but will exacerbate RLS, however I would think that would be worthwhile since Parkinson's is a more serious disease but do it in the morning.
Gabapentin or pregabalin won't help your Parkinson's per se although although gabapentin does help the rigidity, bradykinesia, and tremor.
Gabapentin will help your RLS but it won't while you are on pramipexole.
If your doctor will agree to Rasagiline then I would suggest you come off pramipexole which can cause augmentation of RLS and take gabapentin,
First off check if you are on the slow release pramipexole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular pramipexole because the slow releases ones can't be cut if needed.
To come off pramipexole, reduce by half of a .088[.125] tablet every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. 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.
On the gabapentin the beginning dose is usually 300 mg gabapentin . Start it 3 weeks before you are off pramipexole as it takes that long to be effective although it won't be fully effective until you are off it for several weeks and your withdrawal symptoms have settled. After that increase it by 100 mg 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.
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 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 or antacids don't take it within 2 hours for the same reason .
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 although it doesn't for all, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.
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.
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. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.
Thank you so much! Your response is better than my neurologist! So do I take the pramipexole and gabapentin together, as I wean off the pramipexole? Is it safe to take both? Please send your list to me.
Amlodipine, a calcium channel blocker, makes RLS worse for most. Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Clonidine can actually help RLS. Discuss these with your doctor. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....
Why are your taking lithium? Do you have bipolar disease? Lithium also makes RLS worse. Let me know why you are taking it and I may have a safe substitute.
Your answers are so thorough! I tried beta blockers for my BP, but it made me dizzy. The amlodipine works well at 2.5mg, and I haven't noticed an increase in RLS. I'll look into Clonidine and Tadalafil though.
Lithium is neuroprotective and reduces Parkinson's symptoms. I don't have any cognitive or mental health issues.
Yes the GPS have a lot to learn. Mine told me 3 days to come pramipexole after being on both ropinerole and pramipexole for 6 months! What would we all do without the wonderful advice from everyone on this forum.
I didn’t reduce my Ropinirole until I had progressively increased my dose of Pregabalin to 300mg and then only in 25mg stages. A few days between increasing pregabalin and same as you reduce Ropinirole
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