Firstly, thanks for all the fantastic information I've found here. Having been on Pramipexole for 20+ years, I'd been finding that it was becoming less effective and found/joined the RLS:UK website and found that I shouldn't be taking it all!
As a result of what I've been reading here, I had an appointment with my GP who agreed that I shouldn't be on Pramipexole AND that I should have my iron levels tested (which happened this morning). Instead of Pramipexole, he's given me Gabapentin (300mg) tablets and suggested that I slowly come off the Pramipexole.
I've been gradually reducing the early evening Pramipexole (you can see how many/when here: docs.google.com/spreadsheet..., but I was finding that my RLS was getting worse and my sleep has been appalling recently - around 3 hours per night.
I therefore increased the Gabapentin to 600mg, but didn't notice any improvement in the RLS and so have ended up increasing the Pramipexole back up to 2 x 0.088mg in the early evening.
I've just read a reply to another post by SueJohnson suggesting taking the Gabapentin much earlier than I have been doing (5pm where I typically take it around 8pm).
Can anyone suggest what might be a good dosage 'sequence', e.g. 300mg Gabapentin @ 5pm, 1 or 2 Pramipexole 0.088mg at first around 7pm, and perhaps split my slow-release 0.26mg Pramipexole in half?
And how long should I give it until I feel I might have to increase the Gabapentin or reduce the Pramipexole?
Many thanks in anticipation.
Patrick
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My suggestion for 5 pm was for Horizant which is similar to gabapentin but not the same so let me give you my usual advice for coming off pramipexole and for gabapentin. To come off pramipexole, reduce by half of a .088 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.
If that is still too much to reduce, you can get an inexpensive jewelry scale that measures down to .01 gram from Amazon ($11 in the US) and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.
The beginning dose is usually 300 mg gabapentin . Start it 3 weeks before you are off pramipexole although it won't be fully effective until you are off it for several weeks. 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. 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)."
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 ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. 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. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you 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
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, eating late at night, 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 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.
Sadly Patrick, there's no escape from severe RLS when withdrawing from Pramipexole. You've been on a brain altering chemical for 20 years. The withdrawal WILL be brutal.That's why you go slowly as per SueJohnson schedule.
Gabapentin will NOT help until 4 weeks after last dose of Pramipexole.
Withdrawal is harder than from heroin, but UK doctors have no idea how severe it is.
You will have severe RLS with each dose drop.
Ask your GP for a low dose opioid to settle the severe withdrawal at each dose drop. Take a phone video and show your legs jerking with each reduction.
Do NOT be tempted to go back on Pramipexole. You'll never have peace/rest until you get off that stuff.
I guess reducing my Pramipexole by a third per week was obviously a bit hopeful - and no wonder it wasn't working!
Given that I'd been down to 2 x 0.088mg before going down to 1 (which very definitely wasn't working), I took 2 last night and had a better night's sleep (I wouldn't say it's the best, but certainly better than it has been recently), should I stay at 2 tablets, or increase it to 2.5 for a week or two, then bring it back down to 2?
I'd increased the Gabapentin to two 300mg tablets which I'd thought might compensate for the reduction in Pramipexole. That obviously wasn't correct, so would you advise me to reduce that to one tablet for the moment - or even stop taking it until I'm closer to getting off the Pramipexole?
I had blood taken yesterday morning so am hoping to soon hear what my ferritin and transferrin saturation (TSAT) numbers are. Fortunately the doctor I saw recently is much younger than the doctor who originally put me on Pramipexole, and seems to know a bit about RLS, so thought it was a good idea to check my iron levels.
Stay at 2 x 0.088mcg Pramipexole for 2 weeks. Then reduce by half a 0.088 pill every 2 weeks. You WILL have increased, severe RLS. Any reduction in chemicals affecting the brain causes severe withdrawal. It should settle. When it settles, reduce again.Yes, reduce gabapentin to 300mg and start to increase when you're 4 weeks away from your last dose of Pramipexole.
It is hellish. I can't lie. I honestly thought I wouldn't make it.
Ask GP for a low dose opioid like codeine, tramadol or oxycodone to take on the worst nights and when you drop the last dose. The 2 weeks after the last dose is dreadful. Little to no sleep for at least 5 days and very, very severe RLS.
I advise you or a family member to video the withdrawals so doctors can see how horrendous it is. It might make them stop before they dish out these pills.
Then increase gabapentin as per SueJohnson schedule.
Thanks again, Joolsg - even if it's not the good news that I was hoping for!
Any suggestions about cutting down on my slow-release 0.26mg tablet? Should I continue with that tablet until I've finished with the 0.088mg tablets, or continue with some of the early evening prescription whilst cutting down on the 0.26mg tablet?
A slow release tablet can't be cut. Cutting them can cause the entire dose to be released . A .26 mg tablet is equivalent to a .26 tablet taken twice a day so ask your doctor for the equivalent in regular tablets. It would be like taking .52 mg
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