Greetings to one and all from Taipei City, Taiwan. 64 years old male, first sleep study 2015: sleep apnea - CPAP therapy, successful [atrial regurgitation (leaky valve)]. RLS, PLMD, myoclonus nocturnus - Clonazepam [tapering up to 0.5mg./night to date], Pramipexole [0.125mg./night from September 2024], Pregabalin [75mg./night from March 2025.]
I just discovered that Dopamine Agonists are no longer recommended for RLS, so asked my neurologist if I could transition to Lyrica, which I have been taking for a month. He told me you don't have to taper off the Mirapex, just use it when you need it.
Last night I skipped the Mirapex and suffered continuous, powerful myoclonic jerks until 4a.m. I woke up at 8a.m. very tired [but to be fair I did feel rather more alert than recently.]
Since it is a modest dose, and I haven't been taking it long, can anyone advise me on the suitability of a short fast taper, compared with a long slow one, please? Meanwhile, I'll see about registering with another doctor...
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RLStaipei
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However- if you are young, fit and healthy- a faster withdrawal of 3 weeks is possible.
Just be aware you will experience violent leg jerks, severe all over RLS and zero sleep for around 2 weeks.
To reduce more slowly-
reduce by half a 0.125 (0.088) mg pill every 2 weeks.
Usually a low dose opioid is needed for 4 or 5 nights at each dose reduction.
And of course- ensure serum ferritin is above 200ųg ideally and that you review/safely replace trigger medications. See the website for detailed information.
Welcome to the forum. You will find lots of help, support and understanding here.
Joolsg is correct. Your doctor is wrong. I will give you my usual answer which repeats some of what she says but also adds some things.
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. NICE in February changed their recommendation to say gabapentin/pregabalin should be prescribed and not DAs so print that out and take to your doctor
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 pregabalin, (lyrica) normally you would start it 3 weeks before you are off pramipexole 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 25 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.
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 200 to 300 mg of pregabalin."
Have you had your ferritin checked? If so what was it? This is the first thing a doctor should do for RLS. 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 Https://mayoclinicproceedings.org/a...
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 and sometimes even with it, 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 what country you live in and your gender and any other health conditions you have.
Dear Jools and Sue, thanks for the advice, though blimey, that Dopamine Withdrawal Schedule makes grim reading. Dr. Berkowski over on Youtube offers a more optimistic perspective - I suppose it depends on one's individual circumstances. On Sunday night I thought I would play a little trick: skip the Mirapex but take twice my nightly 0.5mg. Clonazepam. Had to throw in the towel after an hour or two - myoclonic jerks too distressing. Last night I took half my nightly 0.125mg. Mirapex. Had to get up a couple times to exercise my legs, and was compelled to get up before the alarm this morning, felt tired but basically OK - made the distance at the pool this afternoon, no problem. I'll probably alternate 1/2 pill - 1/4 pill - 1/2 pill - 1/4 pill... for the next month or two and take it from there. Thanks again, and if I hit a snag, I'll be back☀️
There is no point to alternating 1/2 pill - 1/4 pill, That won't help at all since as soon as you go back on the 1/2 pill from the 1/4 pill it's as though you have been on the 1/2 pill all along. And then going to 1/4 pill from the original whole pill will be too much of a reduction and you will suffer.
Follow my suggested withdrawal schedule which is the same as on the RLS-UK site. If that is still too much to reduce, you can get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks.
Dear Sue, thanks for the clarification, it is a point that, in my ignorance, completely eluded me. Now taking quarter of 0.25mg. Pramipexole nightly - myoclonus pretty frequent but settling down around 03:00. From my limited knowledge of this subject I guess that's my natural store of dopamine increasing as morning approaches.
I tested positive for Fe and Mg way back when my symptoms started, but without a pre-test fast. I doubt if infusions are an option here; and I imagine a Taiwanese doctor would be locked up for merely mentioning opioids.
Besides the usual recommendations on sleep hygiene, could anyone recommend any further measures to mitigate the frustration and distress? I'm fortunate enough not to have to go to work unless I want to, and despite my age I'm in tiptop physical condition.
My heartfelt best wishes go out to all that have been taking dopamine agonists longer than me.
Do you know what your ferritin is from your test? Call the doctor's office and ask if you don't know Also ask for your TSAT (transferrin saturation percentage) and reply back here.
I stopped Pramipexole as it no longer worked. I was taking 8 x .088 every day. Took me six months to taper off of it! I was then put on Pregabalin which didn’t help. I am now on 5mg Oxycodon long acting in the morning and 10mg oxycodon long acting at night. This works for me. If I have a particularly bad night I will take an extra 5mg. This does work!
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Will the effects of augmentation ever go away?
Hi..RLS..another night.
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