Pramipexole relief

[Carowind]

My doctor has just prescribed quinine as a relief from Pramipexole which I have been on for over 20 years. I was so taken aback I couldn't argue with her, but surely this doesn't work as well as any of the drugs described here. Has anyone had any success with quinine?

[ChrisColumbus]

Quinine is sometimes prescribed for nocturnal leg cramps, and sometimes said to be effective for that. I've not seen any evidence that it's effective for RLS. It also presents some dangers: the BNF cautions about a long list of possible side effects:

bnf.nice.org.uk/drugs/quini...

[ChrisColumbus]

Why is your doctor prescribing a relief from pramipexole? Are you suffering from augmentation:

rls-uk.org/augmentation-reb...

As the article points out, if you're suffering from augmentation you need to come off pramipexole very slowly - never suddenly. First line treatments for RLS are now gabapentin, pregabalin or low dose opioids.

rls-uk.org/medical-treatments

[Joolsg]

Welcome to the Help Forum.I suggest you find a new GP asap. Yours knows less than zero about RLS.

Quinine is for nocturnal leg cramps and hasn't been prescribed for RLS in years! Did your GP suggest quinine in place of Pramipexole?

What dose of Pramipexole are you currently taking?

Pramipexole is a dopamine agonist. These drugs are no longer prescribed by experts because of the very high rate of drug induced worsening of RLS ( augmentation).

As you've been on Pramipexole for 20 years, I'll bet it stopped covering your RLS years ago and you have had to keep increasing the dose?

Have a look at RLS-UK website. Read as much as you can because, sadly, UK doctors aren't taught about RLS at any stage during medicsl training.

Read about Augmentation.

Did your GP order full panel fasting blood tests?

Let us know the dose of Pramipexole you are currently taking, the other meds you are on, including OTC meds like cough meds and we be able to help.

You Cannot stop Pramipexole overnight!

It is extremely, extremely dangerous. So I hope the GP hasn't suggested a straight switch to quinine.

rls-uk.org/augmentation-reb...

[SueJohnson]

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.

If you meet any of these criteria, you need to come off pramipexole. It is no longer the first-line treatment for RLS, gabapentin or pregabalin is. It used to be the first-line treatment which is why so many doctors prescribed it but they are not uptodate on the current treatment recommendations. To come off pramipexole, reduce by .088 mg 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. But in the long run, you will be glad you came off it. On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). 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. 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 of gabapentin or pregabalin 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) daily." If you take magnesium 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 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...

Have you had your ferritin checked? If it is below 100 improving it to 100 or more helps 60% of patients and in some will completely eliminate their symptoms. If you haven't had your ferritin checked, ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. 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.

[Carowind in reply to SueJohnson]

Many thanks for your very detailed reply. I was also of the opinion that the g.p, who sounded young, didn’t know what she was talking about. She was quite dismissive when I queried this, but she said ‘ just try it and we’ll see how it goes’. I think she meant me to stop taking Pramipexole without knowing about the necessary withdrawal. However I have a month’s supply in hand so shall continue taking it and seek further advice from another g.p. The problem is that I am a new patient at the surgery as have recently moved house, and none of the g.ps know me. I think I will write a letter in the hope that it will get to the right g.p.

[NeuroSeeker in reply to Carowind]

Yes. I'll say it again - even a low-dose sudden drop can cause damage to your brain. I am told it's like withdrawal from heroin, which I take as an u reliable comparison but makes me feel better because it was awful. I felt my brain break. I suddenly thought different, and my favorite thing in the world - reading - became amazingly difficult. I went from visually reading about 75 books/year to 0-1. I have read pages of hundreds of books. If I don't take and review notes, I can forget I ever saw it.

Ditch the doctor willing to take a chance with your mind. Criminal.

[Joolsg in reply to Carowind]

If you do write a letter, include a link to RLS-UK website AND the Mayo Clinic Algorithm. They won't have heard of augmentation,and most GPs think it means an increase in drug dosage.

[Carowind in reply to Joolsg]

Thank you. I will include that information. You’re quite right as that’s what happened so far.

[SueJohnson]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, stress and vigorous exercise. Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, 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, 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, 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.

[Carowind in reply to SueJohnson]

I think I have learnt all this over the years, but g.p.s’ knowledge fails to keep up with this distressing problem.

[Carowind in reply to Carowind]

Thanks but there’s too much to list here.

[SueJohnson in reply to Carowind]

It might be worth it to list them because if even one makes your RLS worse and I can give you a substitute that doesn't, that could make a big difference. Let me at least give you the general categories: sedating antihistamines, SSRI and SNRI antidepressants, tricyclic antidepressants, statins, diuretics, lithium, calcium blockers, calcium antagonists, statins. central nervous system stimulants, dopamine antagonists, many but not all anti-nausea medicines, some but not all antacids, some but not all beta blockers, some but not all anti-hypertensives, some but not all blood thinners, some but not all anti-anxiety medicines, many medicines that treat bipolar and other mental health problems, many medicines that treat epilepsy and many drugs that treat GERD. I can give you safe substitutes for many of these.

[Carowind in reply to SueJohnson]

Thank you, Sue. That’s a very helpful offer. Here’s my list:

Lacidipine 4mg morning and 2 mg evening

Bisoprolol 1.25 mg daily

Darifenacin 7.5 mg daily

Atorvastatin 10 mg daily

Omeprazole 40 mg daily

Furosemide 40 mg daily

Pramipexole was 3. X 180 microgram daily, now 0.52 mg prolonged release daily

Also taking Anadin Extra 2 tablets twice a day and

Co-codamol 2 as necessary at nighttime as I have osteoarthritis .

[SueJohnson in reply to Carowind]

Oh my! Most of the medicines you are taking make RLS worse.

Lacidipine is a calcium channel blocker used to treat high blood pressure which makes RLS worse.

Imdur (Isosorbide Mononitrate, Monoket) is a nitrate that relaxes the blood vessels and increases the supply of blood and oxygen to the heart and is probably safe.

For high blood pressure propranolol (Inderal, Hemangeol, InnoPran) seems safe and there is Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. And then there are the ace inhibitors such as Zestril (Lisinopril, Qbrelis, Prinivil) and Perindopril (Coversyl). Other possibilities are: Clonidine (Catapres, Kapvay) an Alpha-2-Agonist used to treat high blood pressure, insomnia and may help RLS, tenex (Guanfacine, Intuniv) treats high blood pressure, prazosin (Minipress) - alpha-adrenergic blocker that treats high blood pressure; useful in managing sleep-related problems caused by PTSD.

Bisoprolol is a beta blocker that also treats high blood pressure and may or may not make RLS worse. It does make PLMS worse.

Atorvastatin is a statin and 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 although the FDA does show it increases RLS for some people and then there is Triglide which seems safe. 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.

Omeprazole is a proton pump Inhibitor and RLS-UK says most proton pump Inhibitors worsen RLS. It is an antacid. It also interferes with the absorption of iron and magnesium. A safe one for RLS is Gaviscon Extra Strength Tablets and Liquids.

Furosemide is a diuretic and all diuretics make RLS worse and there aren't any safe substitutes.

Anadin contains caffeine which may or may not make RLS worse.

Discuss all this with your doctor.

[Carowind in reply to SueJohnson]

I should have added that the g.p.’s attitude was always, ‘ If it ain’t broke then don’t fix it’!

[SueJohnson in reply to Carowind]

Ah - but having RLS symptoms means it is broke.

[Meritus in reply to SueJohnson]

Hi Sue,

My RLS has worsened in recent months since I was prescribed Furosomide for fluid retention and a swollen foot/ankle. The F caused a flare-up of kidney stones so gp put me on Losartan and then changed it a week or two later to Lotarsin Potassium daily plus 1 F on the 3rd or 4th day. I now have been given Contiflo XL by a locum in addition, to help shrink the prostate (calcification apparently impeding flow of urine). She has advised to leave off the F although the Oedema (swollen foot) thankfully is reducing.

I still use my Restiffic foot wraps most nights but now have to wear them for hours on some occasions in order to get 2 or 3 hours sleep. Also getting RLS at any time of day instead of the late evening.

Since New Year I had 3 months relative sleep bliss experimenting with Kratom but was up to 20 capsules a night before I had a blockage in the gut that took a week to remove.

It does seem that RLS gets you whichever way you turn. I continue to refuse the useless prescription drugs for it. Still taking Mag Citrate and P5P VIT B6. Experimenting tonight with upping the Mag to 750mg.

[SueJohnson in reply to Meritus]

Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. You want your transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100. If they are not, post them here and we can give you some advice.

[SueJohnson in reply to Meritus]

Don't be afraid of the side effects of gabapentin. Most of the side effects of gabapentin 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. All medicines have side effects. If you read about the side effects on almost all medicines you would never take any medicines. They have to list them all even the rare ones to cover themselves. Nothing ventured, nothing gained. And if you do have side effects you can't live with unlike the DAs if you come off it very slowly like 25 mg every 2 weeks or slower you will have no withdrawal symptoms.

[Carowind in reply to SueJohnson]

I have another appointment with another g.p. on Monday when I am hoping to present my case more forcibly for the withdrawal of Pramipexole. I have set this out in a letter which I hope they will have had time to read. As far as Gabapentin is concerned I had very violent bouts of vomiting making me ill for 36 hours. This lasted for several months. I do not want to repeat this. At a consultation for another complaint, the doctor confirmed that vomiting was a side effect of this drug. I don’t know if Pregabalin has the same effect.

[SueJohnson in reply to Carowind]

I can certainly understand why you wouldn't ant to take gabapentin. That is terrible. You might want to try pregabalin. Although it is basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other. However I can certainly understand it if you don't want to try it. One possibility is to divide the 25 mg pregabalin tablet into quarters and try that. That way you would know if it makes you want to vomit without the possibility of the violent bout you had.

[Carowind in reply to SueJohnson]

Hi Sue, Thank you for all your advice. I saw a sympathetic g.p. this week, who has prescribed Pregabalin to be taken while gradually withdrawing Pramipexole. He also prescribed iron tablets based on an iron test. I am due a review of medication when I am hoping to point out the medication that exacerbates restless legs.

[SueJohnson in reply to Carowind]

What was your ferritin?

Take your iron tablets with 100 mg of vitamin C or some orange juice since that helps its absorption. If your doctor prescribed ferrous sulfate and you have problems with constipation iron bisglycinate is better. Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption. If you take magnesium, calcium or zinc take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take tumeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

[Carowind in reply to Carowind]

Thank you for all that information. It looks like it all needs a review, which I ought to have as have only recently joined the practice.

[Carowind in reply to SueJohnson]

I also avoid caffeine. A few years ago my doctor prescribed Gabapentin but this caused quite violent vomiting attacks , so I continued with Pramipexole. Last year, while spending a night away from home, I had left Pramipexole behind and had to manage with just co-codamol all night. It was a terrible night without any sleep.

[NeuroSeeker]

No. You should be titrated to a very low dose with opiod support as needed.

I was told to quit pramipexole on 2-1-20. I was not properly titrated and my body-brain had a significant reaction. I still cannot read as I once did, I have brain fog, developing a stutter.

This doctor is playing roulette with your brain. Seriously, it's ruined my life.

[Simkin]

Quinine did not work for me.

[Carowind in reply to Simkin]

Thank you. That’s what I thought.

[tagaxel]

That is completely and utterly insane! Pramipexole, of course is a dopamine agonist and ultimately ends up causing augmentation. It is also a monstrous drug to get out of your system. The best way is through micro tapering which I can explain if you are interested. Most people consider either Lyrica or Horizant as the primary drug to treat RLS.

[Katyparis]

Hi. That seems strange as quinine has some nasty side effects & was taken off the prescribed list for some countries. I live in Australia, have been on Pramipexole for 20 yrs & just weaning myself off as it is no longer the first line treatment for RLS because of its augmentation issues. Well done for questioning this. Can you get a second opinion from another doctor? Look at the Youtube videos on Augmentation by Dr. Christopher Earley & Dr Andy Berkowitz. Good luck.