Is it ok to take Quinine: Hi. I have... - Restless Legs Syn...

Restless Legs Syndrome
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Is it ok to take Quinine

Bev2952
Bev2952

Hi.

I have suffered with RLS off and on for years and years but stretching my calf muscles seemed to fix it. Recently RLS has got much worse. I had complete knee replacement 12 weeks ago and all is good. About 10 days ago RLS flared up one night and I couldn’t get rid of it. I’ve now been taking magnesium tablets and drinking tonic water every night. I even bought a gravity blanket. But none of this seems to be working. Two nights ago I took 2 30mg codeine tablets and woo hoo I slept right through. Last night I just took one 30mg and again have been awake all night apart from a couple of hours. I’ve spoken to my doctor and he has prescribed Quinine for me but I’ve read it shouldn’t be taken. I’m so drained by it I will do anything but don’t want to take something that might be bad for me. I need some help please x

33 Replies
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Hi Bev, sorry to hear that your doctor doesn't appear to know much about RLS. This isn't a surprise and its also not a criticism, it's just fairly common.

Fistly, if you had knee surgery 12 weeks ago yoiu were probably given an opioid painkiller. This would have incidentally treated your RLS as opioids can do this. However, once you stopped taking that opioid, then your RLS may "bounce" back again.

In addition, codeine is an opioid and hence, that's why taking that helped your RLS.

Quinine used to be prescribed many years ago for RLS, but I believe this was discontinued largely because it's not that effective and more effective medications were discovered.

It was also discontinued because it has some unfirtunate effects and is considered dangerous.

I will write more later, I'm being called for lunch!

Hidden
Hidden in reply to Manerva

Yes, quinine can cause reduced kidney function.

Part 2

I am assuming that you've not seen a doctor about your RLS before and that you've never been prescribed any medication before.

Based on that and not knowing how severe your RLS is "normally", I'd say that you need to consider some of the non-pharmacological methods of managing your RLS, at least at the same time as taking medication if not before.

If you're not able to get to sleep every night, then this does sound quite severe, however.

There are quite a few non-medical things you can do to help with your RLS. I'll provide a link below with more detail but in summary, -

-Iron is the first thing you should consider

-You might also check if there are other medications you're taking that might be making your RLS worse.

-Alcohol, caffeine and refined sugar can make RLS worse as well as some foods.

-Some supplements like magnesium, vitamins B112, vitamin D and celery juice can help. (You can get celery juice tablets!)

When it comes to medications, certainly opioids can be very effective as you've found.

However, you may have a supply of codeine at the moment, I'm not sure on what basis you're having it prescribed, but you may find no doctor willing to prescribe it for RLS. If you can get a prescription long term then there are additional issues with codeine and that is the side effects and dependency.

If you do choose to use an opioid for RLS and you can find a doctor who is agrreable to prescribe one, codeine is not really the best. Typically low dose oxycodone or methadone are prescribed for RLS (if obtainable) and more recently buprenorphine seems to be gaining popularity.

However opioids are not widely recognised as the first medications that should be tried for RLS.

Still assuming youve not been prescribed a medicine for RLS before then there are two classes of meds that are more easily obtainable which can be effective. Depending in which country you live in, a GP or PCP can prescribe one of these.

It is recognised that the first class of drugs that should be tried for RLS is either gabapentin or pregabalin. These can be effective for RLS and especially helpful where insomnia is a strong feature. They also have pain relief characteristics.

I have to warn you that they do have some side effects which affect different people to different degrees. Reading a list if these makes them sound horrendous, but not everyone experiences these. Some wear off after a few weeks. Some people find the side effects easier to tolerate than they do their RLS.

You were lucky, in a way, that your Dr prescribed quinine. This means they didnt prescribe the other, more traditional class of meds for RLS, the dopamine agonists (DAs). DAs are actually more effective than the gabapentinoids for RLS in the short term. You may find quite a few members of this site stating they use a DA, pramipexole, ropinriole or rotigotine and think they're marvellous.

I have to warn you, mainly because doctors don't seem to be aware, that in the long term DAs are not a good idea. This is becasue they can lose effect after a while, cause a serious condition called Impulse Control Disorder or more commonly and more significantly cause a condition called "augmentation". It is because of of the ease with which DAs cause augmentation that they are not recommended as a first medicine fior RLS.

Its only my suggestion but I think you should do the following.

Do NOT take the quinine

Try the non-medical remedies for RLS (see the link)

If you want a medicine, go back to your doctor, taking with you information from the link (see below) and ask either for an opioid or a gabapentinoid.

If you live in the UK, I can give you a link to UK only national guidelines for doctors on the management of RLS which a UK Dr cannot ignore. This is if you are in the UK, you cannot access it from any other country.

Here's the link I referred to.

uptodate.com/contents/treat...

I hope you find this helpful.

Lunch was borsht, yummy :-)

Bev2952
Bev2952 in reply to Manerva

Hi. Thank you so much. Lots of very good information. Doc did say if Quinine didn’t work he would give me ropinriole Which is what you said to avoid. It’s all a huge nightmare.

Yes I’m in UK. So would like that link please. So I should try iron tablets first then? What strength should I take. I’ve got to do something it’s wiping me out. I’m dreading going to bed every night now. !

I’ll click through the link and have a read. Xxx

Manerva
Manerva in reply to Bev2952

Here some information about quinine -

"The FDA (US Federal Drug and Food Adminstration) has issued warnings about quinine since 1994 and more recently about its minimal effectiveness in treating leg cramps. In 2006, it banned the sale of all unapproved drugs that contained quinine except the branded drug, Qualaquin, because of the risk of serious side effects or death."

consumerreports.org/cro/201...

Qualaquin is only approved for Malaria.

You can start taking an iron supplement, but please don't think it will work immediately. Its not a medicine.

Your doctior should have done a blood test for "ferritin". Without getting too complicated, for someone with RLS it's best if their ferritin level is above 100ug/L. Your doctor may not know this. Most GPs seem to think 50ug/L is OK, which it is "normally", but not for someone with RLS.

Be aware if your doctor says your ferritin is "normal" then that means it's anything above 15ug/L, - ask the NUMBER!

I'll offer more info on taking iron later, unless someone else does. It's not straightforward.

Prescribing quinine first is a little irresponsible in my ooinion.

Ropinirole IS a dopamine agonist. I would rseist any attempts by him tonpersuade you to start on this. Doctors, by law have to offer alternatives, to say there are none is unlawful.

You can also ask, naively, "about augmentation". The response might be "whats that".

The law in question incidentally, is the law of "informed consent". Under this law, a doctor has to have your consent for you to undertake a treatment. This is usually "implicit" i.e. you don't have to sign a consent form, but the law still applies. All you have to do to withold your consent is say "No thank you".

The law also requires that thr consent is informed, i.e. that the benefits of the treatment are explained to you but also , the risks and the alternatives. They also have to check that you have understood the information.

You are within your rights to refuse any treatment you don't wish and to ask for alternatives.. Some doctors then threaten you with being "non-compliant" and this is an abuse of the law.

It will help your case for being prescribed either gabapentin or pregabalin as a first medication if you take along a printout of some of the previous link I gave you. You can also refer the doctor to the National Institute for Health and Care Excellence (NICE) guidelines on the manangment of RLS.

Here's a link -

cks.nice.org.uk/restless-le...

Note particularly the section that mentions the medicine options. i.e "What drugs should I consider to treat restless legs syndrome?"

This section identifies the two first line medicines, dopamine agonists and "alpha 2 delta ligands" i.e. gabapentin or pregabalin.

Note it also states that you shouild be aware of the complications of the DAs that is, augmentation, loss of efficacy and Impulse Control Disorder. (just in case your doctor thinks you're making it up.).

The "gabas" aren't actually licensed for RLS, but they are for Epilepsy and nerve pain. Your doctor may therefore prescribe therm as if for those conditions, not as for RLS. If he/she doesn;t know what augmentation is, then they probably won;t know the prescription for RLS is ONCE a day, not 3 times a day. The dose of gabapentin is 300mg to start with, buidling up to 900 to 1200mg by either 100mg per day or 300mg every 3 days (capsules are either 100mg or 300mg). See the other link for detail.

NOTE that these meds take about a mnth to start working fully and side effects may be wlorse at first, then fade. These mainly include drowsiness, dizziness and a stumbling gait when walking. Therefore it's best to take them only at night - you cant fall over in bed!

I hope this helps

WideBody
WideBody in reply to Manerva

Thank you for taking the time out of your day to do this. I can't believe what mess DA drugs made of my life. Finding the right information on the internet is virtually impossible for a new person to find.

I realize everyone is different, but there are some very simple and basic first steps that today a lot of Doctors still miss.

Thanks again from the other side of the world.

intermk
intermk in reply to Manerva

I too was prescribed tonic water at one time for RLS. Although the sale of Quinine in "unapproved drugs" is no longer allowed, it is still in Tonic Water here in the states. "The FDA allows tonic water to contain no more than 83 parts per million of quinine . . . ." Apparently this amount is too low to provide relief from leg cramps and RLS. I drank it for many months and just kept slugging down more and more of that miserable stuff trying to find an amount that would work. It contains a whopping 32 g of sugar in just one 12 oz bottle (355 ml). So I gained a lot of weight and never got any relief from RLS symptoms. I'm surprised that some docs are still suggesting this as a remedy.

Manerva
Manerva in reply to intermk

Hi, I've not come across any Drs "prescribing" tonic water. Ceratinly not in the UK because here they're not allowed to give a prescription for which you dont need a prescription.

They might prescribe quinine tablets however, but I dont cime across that either.

You'd have to dirnk several gallons of tonic water a day to get anything like a sufficient dose. of quinine.

intermk
intermk in reply to Manerva

Yes you are correct. I misspoke and meant to say that my doc suggested I try tonic water for the quinine since he had no other idea what to do with my RLS issue at the time. I changed docs soon thereafter.

Manerva
Manerva in reply to intermk

I hope the new doctor was better than the old one! :-)

Hidden
Hidden in reply to Bev2952

Nobody on this site should be advising people what they should or should not take. Manerva admonished me for even saying what worked for me.

agrasso
agrasso in reply to Hidden

Sorry I can’t agree with you on that. When someone is so desperate for help any and all information is appreciated. I take into consideration everything people say and do my own research. Actually I’ve been helped tremendously with this site.

Hidden
Hidden in reply to agrasso

You have every right to disagree. I've only been on this site for a short time and have been amazed at the amount of conflicting advice that I've read. I'm not a medical person myself. I do suffer from RLS which is a medical condition, therefore I take the advice of the medical profession - in this case, my Neurologist and my GP. Although it is very interesting to hear about the different experiences of people with RLS, they should not recommend treatment. Respect for the doctors would also be appreciated - they deserve that.

Joolsg
Joolsg in reply to Hidden

I think if you read most posts you’ll see why respect for doctors is low or non existent.

RLS is not taught in any depth in the UK and the VAST majority of GPs have no idea what it is, how to treat it or what damage dopamine agonists do to the nervous system and brain.

We have had people suffering terribly because their doctors have prescribed 4 times the maximum dose of dopamine agonists. They have no idea how to get people safely through withdrawal.

Without the expert advice of a lot of people on here, many RLS sufferers would be struggling with augmentation and withdrawal.

Manerva has spent a lot of time researching RLS ( as have many others of us on here ) and I guarantee he knows more than any GP or general neurologist in the UK that most of us will encounter.

That’s a very sad fact.

My local hospital has confirmed they do not teach RLS ( I visit several times a year as a guinea pig) and my MS neurologist has confirmed I know more than she does ( I have the time to read all the research articles and medical text books).

Until you have experienced medical ignorance and negligence concerning RLS treatment, I can see why you may still have respect for doctors.

I do respect them in all other areas where they have a thorough knowledge of the subject. But not when it comes to RLS.

Hidden
Hidden in reply to Joolsg

I'm sorry to hear that you have so little trust in your doctors with regard to RLS. I live in Australia and quite frankly, wouldn't presume to comment on what my doctors know - or don't know. The medication I'm on (Sifrol) is working for me so far and that's all I can say. I've been on it for about 5 years. If I do get this Augmentation that you all describe, I hope that my Neurologist will know enough to help me. But I must admit that if you're desperate enough I suppose you'll try anything. Time will tell. Good Luck.

Joolsg
Joolsg in reply to Hidden

I won’t try ‘anything’. I follow expert advice as set out in ‘Clinical Management of RLS’ - written by top US doctors. Australia is far behind the UK and the USA in RLS knowledge.

All I can suggest is that you watch out for augmentation and be aware that your neurologist will probably not know how to treat it.

That’s why this site exists. We recommend people educate themselves- knowledge is power.

Hidden
Hidden in reply to Joolsg

Well you're the same as me - you listen to the doctors. You don't know if my Neurologist knows about Augmentation or not. I know that the Brits are very defensive about the NHS but you don't need to have a dig at Australia.

Joolsg
Joolsg in reply to Hidden

I’m not. We have a lot of visitors from Australia and they tell us what it’s like. Shumbah is from Australia and had to travel to the USA to get decent treatment. You should read her posts. Very helpful and useful.

Hidden
Hidden in reply to Joolsg

Where do the Brits go to get decent treatment?

Joolsg
Joolsg in reply to Hidden

There isn’t really anywhere. There are only about 4 or 5 neurologists in the UK who know anything about RLS. We find out most info on this site, print out the research articles, take them with us to GP and neurologist appointments and persuade them to listen to us.

Most younger doctors do listen, accept that they aren’t knowledgeable, and read the information we have given them. They then prescribe the meds we need to get through withdrawal from Dopamine Agonists and to deal with the RLS with better meds like alpha2delta ligands and/or low dose opioids.

Hopefully RLS will gain better coverage and research as governments realise the true economic impact.

Hidden
Hidden in reply to Joolsg

That's very interesting Jools. So you believe that the US is the leader in RLS research? Well, I certainly can't afford to pay their fancy prices for medical treatment even if I wanted to. But really - don't you find this site confusing? There are so many different ideas thrown about - some of them worth a try and some of them ridiculous imo. For eg - drinking carrot juice (or any other juice) will not cure anything. I see that you have MS. That must make the RL more difficult for you I'm sure. Thanks for the discussion.

Joolsg
Joolsg in reply to Hidden

Yes there are many posts that are confusing but if you use it/ visit it regularly you soon see that there are a few regular commentators who really know what they are talking about and who have read the research articles etc and Manerva is extremely knowledgeable and helpful and extremely patient and caring and knows his stuff.

The USA is ahead of all other countries because the neurologists can charge for their advice ( unlike here in the UK), there are more people with RLS and so it is economically sensible for neurologists to specialise in RLS and gain funding for research. No research is being done on causes or treatment of RLS in the UK at all. King’s College hospital in London is one of the only specialist sites and they cannot get funding for any research.

I do accept that some alternative treatments work for a minority with RLS - but I don’t believe in soap under the bed!

Diet does help a small minority and IV iron infusions have been shown to help 50% of those lucky enough to find a doctor willing to perform them.

The more you read, the more you will realise what to ignore and what to take seriously. Links to Johns Hopkins University are always a good sign and any articles by Drs Buchfuhrer, Winkleman, Lee, Hening, Allen or Dr Early.

Many of us are participants in the US opioid study at Massachusetts Hospital in Boston being undertaken by Dr Winkleman. The aim of the study is to prove the safety and efficacy of low dose opioids for RLS.

The more you read, the more you’ll find your way around the site and it will definitely be worth while.

Happy reading and researching.

Joolsg
Joolsg in reply to Hidden

I’m delighted Sifrol is currently working for you. Dopamine agonists are miraculous at first. We’ve all been there. However, after several years of bliss, they cause augmentation and that is when the hell starts. I really hope that’s many years away for you but if and when it happens, this site will be the only place you will find the help and advice you will need to get off Sifrol. Your neurologist will either suggest increasing the dose or try switching you to another Dopamine Agonist like Ropinirole or the Neupro patch, both of which will simply prolong the agony.

Joolsg
Joolsg in reply to agrasso

Absolutely agree.

Manerva
Manerva in reply to Hidden

Apologies if you thought I was admonishing you. In your case I was just pointing out that I dont''t think it a good idea to give the impression that taking a dopamine agonists is either wonderful or worth trying without warning people of the consequences of this.

These drugs can do more harm than good.

I often suggest things people can try, but rarely a dopamine agonist. I also try to give a balanced view of anything I suggest and try to give options.

If ever I suggest anythng that others think is unwise or harmful, then they can challenge me.

If anybody suggests anything I think may be harmful, I sometimes challenge it.

Hidden
Hidden in reply to Manerva

Apology accepted. I do realize that you're trying to help the many sufferers of RLS. The problem is that NOBODY knows what causes it, therefore it is difficult to treat. I certainly don't think that Sifrol is wonderful and I wish I didn't need to take it. I don't like the side effects but I hate RL more. Augmentation sounds horrible and I pray that I don't get it.

I’m confused. Are we talking leg cramps or RLS here? Surely quinine is for cramp?

Joolsg
Joolsg in reply to MumofSam

Yep- See Manerva’s response above.

Manerva
Manerva in reply to MumofSam

It is confusing. In the past quinine was prescribed for malaria, but as you say, it was also tried for cramps and additionally. for RLS as well.

It might have helped with malaria, but I believe it wasn't particularly helpful for cramps or RLS.

What further confuses me is that I read posts sometimes that do appear to confuse night cramps and RLS as if they were interchangeable. Often I also read people saying that something works for their RLS but when you look it up, nobody even claims it does. Perhaps it worls for cramps and perhaps it works for pain but it seems as if it's thought that if it works for "something". then it must work for everything and anything.

I think the term is "universal panacea".

My dad used to take quinine. He said he had night cramps and he may have, but looking back, I think he had RLS either as well or instead. Whatever he had, the quinine didnt work!

My dad was a bit of a mystery. Every Christmas I used to ask him, "what do you want for Xmas dad?" He'd always say, " A bottle of Martell brandy".

Years later, after his death I was talking to my mum about this and she said "I don't know why you always bought him brandy, he didn't like it."

Perhaps my dad was a mystery to my mum too!

I’ve been prescribed Quinine for RLS. X

I have been prescribed Quinine for RLS, I did not fill it. (I should note, I sometimes get cramps, bad bad cramps.)

Years ago, when no one understood what RLS was neither the patient or the doctor The patient would try to describe what was going on with their legs and not sleeping, we know people can have a problem actually describing how their legs feel. So the doctor would think the patient was describing cramps and would prescribe quinine. quinine was never meant to be used for RLS only cramps.

Hi Bev,

My rheumatologist told me to drink a glass of tonic water a day whilst flaring as it contains safe levels of Quinine.

I also use magnesium salts in a bath or use it in a spray form before bed!

I have been told weighted blankets also help too.

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