rls and mirapex

[Want2sleep]

I am currently on mirapex and have seen a few people saying it’s bad. Can you tell me why

[ChrisColumbus]

When you last posted here, some 5 years ago, various people replied about dopamine agonists - pramipexole (Mirapex), ropinirole (Requip) and rotigotine (Neupro) - pointing out that these drugs work well for a while but eventually lead to a worsening of RLS called augmentation. They can also cause impulse control disorders including compulsive eating, shopping, gambling, hypersexuality.

This has all been known for a long time (some of it for over 20 years). The 2021 Mayo Algorithm covered some of this, and there's now a Pinned Post on this forum that links to the following 2022 Sleep Review article about the dangers of augmentation on DAs:

sleepreviewmag.com/sleep-tr...

DAs have not been recommended by experts as first line treatment for RLS for some years, and a very recent review by the American Academy of Sleep Medicine clarifies this, explains about augmentation, talks about the importance of iron therapy, and relegates DAs to very short term use or use in very specific circumstances.

Here is a summary of their new clinical practice guideline (CPG):

aasm.org/summary-of-new-cli...

[ChrisColumbus]

You have previously been on ropinirole, augmented, tried gabapentin (which probably didn't work because you weren't fully off the ropinirole, or because that had damaged your dopamine receptors), went back on to ropinirole, and presumably when that didn't work went on to pramipexole. Your doctor is not up-to-date on RLS research and practice as described in the 2021 Mayo Algorithm and the 2025 AASM CPG. They should also have measured your iron levels, and reviewed any other medications that you are on that can trigger RLS (see this list of medications to avoid):

rls-uk.org/medications-avoid

You need guidance on fully weaning off pramipexole very slowly and moving to gabapentin, pregabalin or a low dose opioid. I have not been through this process, so look for detailed replies from SueJohnson or Joolsg who will probably respond shortly.

Meanwhile how much Mirapex are you currently on, and have you had a recent fasting full panel iron test and if so what were the results for serum ferritin and transferrin saturation (TSAT)? Are you currently taking any of the listed 'medications to avoid'?

[Want2sleep in reply to ChrisColumbus]

Thank you so much. I live in a very small town and my Dr admitted she didn’t know much about rls. It’s funny because I was off of all medicines for about 3 years before I started having the bad symptoms again and I told my Dr about the medicine I was on before and she prescribed mirapex and said requip was no longer an option. I thought I was just have to deal with it. I had no idea all this new stuff was out now.

[SueJohnson in reply to Want2sleep]

Again I may be able to give you the name of a doctor who is knowledgeable if you tell me where you live.

[SueJohnson]

I agree with Chris.

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. 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 or pregabalin, 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).

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 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 including HRT, 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.

You may need a new doctor who is more uptodate on RLS. If you tell me what city and state you live in I may be able to give you the name of a knowledgeable doctor.

[Want2sleep]

thank you so much for all this new information. I want having any problems with my rls for about 3 years then all of a sudden it came back with a vengeance. I am currently on vitamin d once a week and rosuvastatin for cholesterol. I am currently on .375 of mirapex a day. But I notice my arms are starting to act just like my legs so I was going to talk to her about increasing my dose bit more I’m not so sure

[ChrisColumbus in reply to Want2sleep]

No, you don't want to increase your dose of Mirapex: that would be the worst thing to do. You need to follow Sue and Jools' advice on coming off this poison.

And unfortunately all statins exacerbate RLS for many: I tried both atorvastatin (the worst!) and rosuvastatin. It was only when I threatened to take myself off the statin that my consultant eventually agreed to put me on ezetimibe (brand names Ezetrol, Zetia) instead. I later found that ezetimibe, which works differently from statins in that it inhibits the intestinal absorption of cholesterol, is recommended in the UK if a statin is “inappropriate or not tolerated”. It generally works more slowly than a statin, so may not be suitable for those with very high LDL.

There are also other alternatives to statins, if cholesterol reduction is really necessary: discuss with your doctor, who - if they are as obstinate on cholesterol as they are ignorant on RLS - may try to insist that statins are essential, that any suffering is balanced by the benefits, and that there are no alternatives. But don't just stop taking the statin without having an alternative action in place!

[Want2sleep in reply to ChrisColumbus]

Thank you

[Zyxx in reply to ChrisColumbus]

That would be so strange from a doctor, since a statin is only ever a statistical intervention. By far most people on statins will never benefit from them, so it seems a very fair desire from a patient to want off them if they give significant side effects.

I have high ldl, or did so 2 years ago. I wouldn’t dream of taking statins. What is their average contribution to prolonged life, again? Something like a few days, I don’t recall.

[ChrisColumbus in reply to Zyxx]

There continues to be debate about the value of statins and the balance between benefits and side effects. Personally, having experienced horrible side effects, and having read 'Statin Nation', I will not take statins.

archive.org/details/statinn...

Many doctors however continue to feel pressure to prescribe statins not just to treat high cholesterol but as a precautionary measure against future possible CVD.

I don't know where you are as you haven't completed your forum profile, but here in the UK this is the official advice given to patients by the National Institute for Health and Care Excellence (NICE):

nice.org.uk/guidance/ng238/...

[Zyxx in reply to ChrisColumbus]

Nice, no pun intended! Very honest, and very visually comprehensible. Is this leaflet shown to most British patients?

Even with this great tool, that’s miles ahead of what Dutch people get (my doctor simply said to my ex that if he didn’t take the statin, it meant he “wanted to die”), there’s still debate about the exact numbers. How long has this debate been going on? I showed some statin-critical articles to my aunt and uncle 20 or possibly even 30 years ago. (They still went on them.)

Bit puzzled that NICE didn’t mention that some statins do and some don’t cause diabetes. Lipophilic vs hydrophilic, right? I think - I don’t really read about statins anymore.

More puzzled about the muscle pain. The NICE report gives that as a really low percentage side effect. Yet probably half of people who were on statins that I talked to complained about it - and that was at least 15 years ago, when it wasn’t very well known that this was a side effect. My ex had unrelenting pain, which is why he stopped.

This is a little akin to sexual side effects from SSRIs. I started on an SSRI some 30 years ago. Hard to imagine now, but this was a fairly early time for SSRI usage, and little was known about the sides. I take it and I notice strong sexual side effects. I go to my doctor. No, she says. That is not a side effect of paroxetine. This must be because of your underlying depression.

I asked everyone I knew personally, whether irl or on the net (my chess site) if they had these same side effects from SSRIs. Out of exactly 20 people I asked, exactly 20 had them.

Even to this day I read fairly low numbers - “Estimates of sexual dysfunction vary from a small percentage to more than 80%”.

Even 80% seems on the low side, to me…I’m just not sure everybody reports these things or even talks about them to friends. I think it’s pretty, pretty, pretty close to 100%.

The same doctor that told my ex he wanted to die one day talked about the muscle pain thing. “We had our regular conference with GPs from the region, and we discussed how the pharmaceutical industry says there are few and only mild side effects from statins, but we decided that because so many patients complain to us about pain, we are going to take it seriously.”

This was after….I dunno, 10 years at least of him prescribing statins. He’s a very nice doc, by the way.

I think of all the people who told me they had debilitating pains in their legs since taking statins before this was a well known side effect - and I just don’t buy that it’s rare. I know how often people won’t say anything to their doctors, and I know how acutely rare it is for a doctor to report a side effect a patient tells them about.

Ah well. It’s all good. Treating the numbers. Maybe I’ll topple over from not taking a statin and I’ll be sad or dead. We will see or, as the case may be, not.

[ChrisColumbus in reply to Zyxx]

I agree that I believe that side effects are under reported, and in some (many?) cases simply dismissed by doctors.

I don't know how widely the NICE patient guidance is distributed: I've never been referred to it, despite having a meeting with my generally good doctor on the subject of cholesterol and statins a couple of weeks ago, and only found it today while researching.

NICE and therefore the NHS are not up-to-date on various areas of global research and best practice - RLS being a notable example - and even when NICE guidance is good many UK doctors and specialists are either ignorant of the guidance or choose to ignore it.

[SueJohnson in reply to Want2sleep]

Do not increase your dose. 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. This means you need to come off it as it will only get worse and be harder to come off it.

All statins make RLS worse. Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS, however don't take it if you have diabetes and then there is Triglide which seems safe. Berberine may help if it is mildly elevated. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.

[Joolsg]

I agree with ChrisColumbus and SueJohnson.Your doctor was negligent in prescribing Mirapex (Pramipexole) after you had suffered augmentation on Ropinirole.

You need to get off it.

Withdrawal schedule is set out on our website at RLS-UK under 'useful resources'.

You should try to find a knowledgeable doctor.

As you're in the USA- join rls.org.

They have a list of RLS centres of excellence and help groups throughout the USA.

[Want2sleep in reply to Joolsg]

Thank you so much