If anyone has just joined the forum- please do look at the RLS-UK website.Particularly the information about dopamine agonists like Ropinirole, Pramipexole and Rotigitone.
If you are on these medications and have severe RLS- you are very likely to be suffering drug-induced worsening. Known as Augmentation.
The dopamine agonists actually make the RLS much more severe.
The only solution is to get off the dopamine agonists very slowly.
Adding other meds will NOT improve the severe RLS until you are off dopamine agonists.
Read the website sections on AUGMENTATION and the 'useful resources' which sets out printable pages on withdrawal schedule, iron therapy and Impulse Control Disorder.
I do think you should post this every few weeks or so in order to try to catch the people who might just ‘dip in’ to health unlocked desperate with their RLS , are on DAs and have no idea yet about the wicked crime of augmentation!
Hi Joolsg have been following your messages on here and I can see your understanding of RLS is extremely knowledgeable. I have had RLS all my life managed it for my younger years but by 40’s became a much bigger problem and now in my 70’s very severe. Have been on Pramipexole for over 20 years tried to wean off before Christmas without much understanding of what would happen and therefore without much success. I want to get off this medication ASAP and am going to see a guy called Dr Buckrell in Bath wondered if you knew anything about him. I have read much of what you have described on this particular challenge and would appreciate yours thoughts……..
Dr Robin Fackrell in Bath is excellent. He knows about augmentation and will prescribe iron infusions and Buprenorphine.Before you see him you can slowly start to reduce normal release Pramipexole by hslf a 0.088 (0.125)mg pill every 2 weeks.
If your GP failed to warn you about drug-induced worsening and hasn't monitored you regularly for augmentation and Impulse Control Disorder or checked iron- you may want to consider taking legal action.
Switalskis want to bring a test case for failure to warn about the high risk of augmentation. No win /no fee. If you might be interested- you can email
Kimberley.Bradfield@switalskis.com
But do get full iron panel blood tests. Raise serum ferritin above 200ųg ideally.
And print out the iron therapy and withdrawal Schedule from RLS-UK website under Useful Resources.
Withdrawal is extremely difficult. Especially after 20 years!
However- once off Pramipexole, the very severe, intense RLS settles and the new meds begin to work.
Buprenorphine can reduce the severe withdrawals. But stay below 0.4 - 0.6mg of Buprenorphine until completely off Pramipexole as you don't want to be on too high a dose initially.
Welcome to the forum. You will find lots of help, support and understanding here.
You may have seen what I am about to say, so forgive me if that is the case.
When you see your doctor ask 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. You want your ferritin to be at least over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20 and 45.
However if you have just had a knee replacement you may have inflammation which can make your ferritin higher than what it really is, so the most important number is your TSAT, so report both your TSAT and Ferritin numbers after you have your test and we can give you some advice.
Ropinirole, pramipexole (Mirapex) and the Neupro (rotigotine) patch are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not uptodate on the current treatment recommendations.
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. as Joolsg said. 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. 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.
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.
The gabapentin or pregabalin will also help your fibromyalgia.The beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) 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 (25 mg pregabalin) 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. (You don't need to divide the doses on pregabalin)
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 (200 to 300 mg of pregabalin)."
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 or antacids don't take it within 2 hours for the same reason (not sure about pregabalin).
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 Https://mayoclinicproceedings.org/a...
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, estrogen without progesterone, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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.
By the way it would really help us to give you advice if you would indicate on your profile your gender and any other health conditions you have.
Dr Fackrell is excellent so it is great you got an appointment but be sure he doesn't prescribe the Neupro (rotigotine) patch.
Thank you for your swift reply Joolsg I go to see Robin Fackrell in a few days and as I have just had a knee replacement I might have to wait a few more weeks to get started, I can however get the bloods sorted and prepare as much as possible. I took this appointment as I didn’t want to wait an another few months to see him this was a cancellation. Thanks again for quick reply and encouragement about Dr Fackrell……..
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