Doctor has just prescribed Quinine Sulphate.

[Boomerang83]

I would really appreciate your thoughts. Having endured some terrible nights with Restless Legs symptoms I finally approached my Doctor via telephone call. He decided that the first line of treatment would be a course of Quinine Sulphate. I have heard conflicting reports about Quinine. Has anyone tried it? Thanks in advance for your replies.

[Kaarina Administrator]

Hi Boomerang83

As far as I am aware, quinine is no good for RLS, for cramps, but not RLS. It is a shame your doctor was not aware of this.

[Boomerang83 in reply to Kaarina]

My feet tend to cramp with spasm like sensations during the day. So maybe I will get some relief. Thanks for reply. Will keep you posted.

[DicCarlson]

Did you go back in time? Quinine has not been used in years. For cramps - start a course of Magnesium supplements (Magtein has worked great for me!

[Boomerang83 in reply to DicCarlson]

How much magnesium do you need to take?

[DicCarlson in reply to Boomerang83]

2g (2000mg) of Magtein - 3 capsules - supplies 144mg of Magnesium. I had leg cramps nightly for years. I tried sea salt, potassium, and a lot of electrolyte supplements. Big time cramps also preceded my severe RLS. They are not directly related but magnesium is a player in both. BTW Magtein is a patented supplement - read more about it... magtein.com/

[RCHD in reply to DicCarlson]

Has Magtein specifically helped your restless legs ? I have this supplement, wondering if I can share with my husband.

[DicCarlson in reply to RCHD]

My RLS was "cured" with iron supplements. I started without ever knowing what RLS was. Docs gave me muscle relaxants. Of course it didn't work. It was classic, severe RLS with little sleep. Eventually I read the Johns Hopkins website about iron deficiency and literally the severe "need to move" aspect of RLS abated within a week. I took Ferrous Bisglycinate Chelate daily raising my Ferritin level from 49 to 105 within a month. I didn't discover the Magnesium for some time later, a year or more. Originally I presented a paradoxical reaction to all Mg supplements - excitable and keeping me awake! Eventually I just pushed through it and take it daily now.

[lorrinet in reply to DicCarlson]

I've been taking 1600mg of Magnesium Malate for about a year, along with a Potassium supplement though i don't know why I continue as my nocturnal leg/ankle/feet cramp is no better. When I get into bed I have to remove the duvet from where I lie, then place it over my lower limbs without moving my feet or toes, or they go into spasm, and I must lie still. Luckily I can do that as I take an opiate for RLS.

During the day my legs swell like tree trunks. Thanks to lockdown I can't see a doctor, and have to describe my legs over the phone. You couldn't make it up. I was due for investigation for this but it was cancelled along with my other medical needs.

Getting into our surgery is like trying to breach a bank vault. Protect the NHS? What NHS?

[Hidden in reply to lorrinet]

I'm so sorry to hear about your difficulties with the NHS. It was struggling before, but Covid has had a major impact on our non-covid health needs.

It seems to vary a lot between different parts of the country.

I still respect our health service. I read in horror about members in other countries, scared that they won't be able to get their meds because of insurance issues or simply can't afford the best.

Incidentally, it's just one possibility, but your swollen legs could indicate a kidney problem. In which case, I hope your doctor knows you're taking potassium!

[lorrinet in reply to Hidden]

I had a blood test for a number of things including kidneys, and all came back negative. I have some symptoms which I thought might indicate hypothyroid but it was negative for that, too.

As for the NHS - I underwent an absolutely third-world experience in our local hospital last week when being fitted with a new contraption to hold my prolapsed uterus up. The 'doctor', who barely spoke English, really hurt me, making me yelp. She didn't manage it and got another doctor, who could at least speak passable English, and he managed it OK. We were in a side-room which opened directly on to the waiting-area, and the first 'doctor' kept going in and out of the door, flinging it wide open each time so that the dozen or so people waiting got a total view of the proceedings. There was no screen around me. Seeing my distress and hearing my protests, a young nurse who joined us went and stood by the door to prevent anyone else from opening it because it was like a public highway in there, and she was the only one who cared. I was allowed no dignity whatsoever. I am complaing to my consultant, if I ever meet her again.

I don't agree with you about the NHS; it's had its day. Other Western countries (not the US) have far better systems, where insurance must be paid by law but there is choice of insurance companies, who compete for the business (there is a government safety-net so that nobody goes without health care). There is far, far less waste and bureauocracy, nor are there the huge waiting times. My sister has lived in several counries in Europe, and my husband is from Australia. Both say they would not, by choice, come here for what their experience tells them is second-rate NHS treatment.

We should consider why no other Western country has copied the NHS system.

[Hidden]

Quinine hasn't largely been used for years. This is partly because it has been found to be potentially life threatening.

See these links

pubmed.ncbi.nlm.nih.gov/184...

It can cause Thrombocytopenia

Thrombocytopenia associated with the use of quinine for the treatment or prevention of leg cramps includes

immune thrombocyto-penic purpura

hemolytic uremic syn-drome

thrombotic thrombocyto-penic purpura with associated renal insuffi-ciency.

Quote from FDA News for Health Professionals (2012)

Mainly it was prescribed for night cramps and there is no connection between night cramps and RLS.

It was probably when RLS was confused with cramps that some doctors prescribed it for RLS. There were no dopamine agonists and gabapentinoids then.

If you want to use it for cramps it may relieve them. There are alternatives, see link above.

I imagine it will have virtually no effect on RLS.

The two main classes of medicines recommended for RLS are either a dopamine agonistsor a gabapentionid. These two ARE effective for RLS.

For very intermittent RLS i.e. only occurring about once a week, levodopa (e.g. Madopar or Sinemet), can also relieve RLS symptoms. Regular use of it however leads to augmentation.

Levodopa can actually be used to confirm the diagnosis of RLS. If you take test dose of levodopa it will relieve RLS symptoms in fifteen (15) minutes. If it does than that confirms the diagnosis. If it doesn 't then you probably don't have RLS.

Once the diagnosis of RLS is defintely confirmed then the current recommendation is that the first medicine to be tried is either pregabalin or gabapentin. They are especially helpful if you have sleep problems. These are proven to be effective for RLS and have little risk of augmentation. They may alsp help with cramps.

[Boomerang83 in reply to Hidden]

You are a fount of knowledge! Thanks for posting.

[Lespenney]

The same thing happened to me a few weeks ago. My Doctor said it was the first line of treatment. I researched it and realized it was more for cramps. It was not being used for rls. I realized my doctor didn’t really understand what I was feeling. I listened to him and got up to two pills and it was doing nothing. Made me sick to my stomach. Terrible taste in my mouth. I went back and he said to take more! I really knew then he wasn’t going to be the one to help me. I didn’t listen to his recommendation. However at the same visit I convinced him to send me to a specialist. I am currently waiting. Could be a year before I see someone. I take Mirapex to help me get through the nights. It does work, but causes side effects such as painful legs, painful lower back and pain in my face muscles. So I don’t take it every day. I would love to find something that works as well Mirapex but doesn’t give me those side effects.

[Hidden in reply to Lespenney]

Sometimes if doctors aren't listening fully or sometimes we don't articulate ourselves very clearly, then misunderstandings can occur.

Years ago I tried to describe my palpitations to a consultant and he diagnosed me as having SVT (SupraVe ntricular Tachycardia). Luckily I knew that was complete nonsense.

I think, like me, people only first go to a doctor for their RLS because they can't sleep. They then may end up with a sedative. In some cases, even an antidepressant.

The other cause of misuderstanding may be that doctors have almost no training about RLS, they're not aware of the diagnostic criteria and they're not aware of treatment options.

Quinine is not a first line treatment. It isn't recommended at all for RLS. The first line treatments in most western countries are gabapentinoids or dopamine agonists.

It's unfortunate your doctor isn't informed. A primary doctor who has the right information can be quite capable of dealing with RLS.

Sorry to scare you, but you could wait to see a specialist who themselves may not be informed about RLS. They're usually neurologists, not RLS specialists.

It's just a suggestion, but it might be a good idea for you to gather evidence about how to manage RLS and take it to your doctor.

If you live in the UK, (I suspect not), I can provide you with very reliable evidence which your doctor could not dismiss.

Sorry the pramipexole (Mirapex) is apparently causing you problems. The first line alternative is a gabapentinoid.

Are you sure the pains are due to Mirapex, it's an unusual side effect.

[Nelxy]

I am prescribed Quinine for muscle cramps, it's working for me. I also take prescribed Pramipexole for rls, it's not working very well though. (Mirapex is pramipexole)

[Hidden in reply to Nelxy]

If the pramipexole isn't working for you and originally it did, then you're suffering "loss of efficacy".

It does depend on what dose you're taking and how long you've been taking it that might indicate how you can deal with this.

[Nelxy in reply to Hidden]

Thanks Manerva, I have other conditions and Dr is still investigating possible treatments for leg and arm pains.

[Hidden in reply to Nelxy]

I hope you find a solution.