Anyone use quinine?: I hear that it... - Restless Legs Syn...

Restless Legs Syndrome

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Anyone use quinine?

HInerk profile image
16 Replies

I hear that it helps ease RLS

I’m currently on 2.5 mg of ropinerol but would like to take less, wondering if it helps

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HInerk profile image
HInerk
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16 Replies
Doversoul profile image
Doversoul

I take Quinne. I have also take Ropinirole. In my case Quinne is taken to reduce leg/ muscle cramps. I wouldn't expect Quinne to help reduce RLS, but as RLS is personal to you it may help where as it probably useless for relief of RLa for other suffers.

I took Ropinirole for several years and now taking 300mg Pregablin daily with 75mg of Trazdone at night. Not perfect, but much better RLS relief than I ever enjoyed taking Ropinirole and other add ons (Gabapentin,etc).

There are two types of Ropinirole - modified release (Requiq) and straight release Ardartrel. I had better RLS symptom control with Ardartrel, but eventually ended up taking Requip 2mg in the morning and 0.5mg Ardartrel at night. I managed to get some quality of life but eventually regular augmentation occurred, and eventually was prescribed Pregablin. So far ok, no augmentation yet - and no side effects to speak off, but it may all go tits up so day.

Quinine is only for cramps not for RLS. Quinine works on the muscles and RLS hasnt anything to do with our muscles. Your ropinerole dosage is slightly too high as its now recommended to take no higher than 1mg...2mg at a push. Is there a reason on why now you want to reduce your dose...? Side effects..?

HInerk profile image
HInerk in reply to

Thanks Elisse,

I have been on ropinerol for 8 years now and do not want to take a higher dose. It still works well most days- but augmentation has brought it to 2.5 mg and I know the next method of treatment is to get off my current mes and use opioids. I do not want to go down that path. I’ve been on this size dose for 4 years, so any supplement that could keep it lower would be great.

Suhavard profile image
Suhavard in reply to HInerk

Quinine had absolutely no effect on my RLS. I gradually got up to 4 mgm of ropinerole and augmented. Coming off was hell but finally got completely off slowly and with the help of tramadol and now take gabapentin which controls it very well.

lorrinet profile image
lorrinet in reply to HInerk

I've been on opioids for around 15 - 16 years and they have literally saved my life because I was just about done with it all. The only side effect with them is constipation, but plenty of fruit and veg sorts that out plus I eat two small bars of liquorice every day. I take a slightly higher dose than I used to and have to get up and walk around in the early hours while my last dose kicks in, but as long as they continue to work it's 100% better than the alternative.

If somebody had said to me back when I started on the opiates, 'you'll lose 10 years off your life with them', I'd have said that's OK, because quality of life, health and sanity, is more important; charging around the house half (at least) the night, throwing my bruised arms and legs against the walls and howling like a banshee until on the third night I don't so much fall asleep as fall unconscious, is no way to live.

You are probably well aware of this already but raising iron levels helps with the symptoms of a majority of rls sufferers so it is worth getting a figure for your serum ferritin (get the figure not just a diagnosis of ‘normal’).

Many people report good effects with magnesium also.

HInerk profile image
HInerk in reply to involuntarydancer

My iron levels are good but I hear RLS sufferers have a hard time using iron to raise dopamine levels,

Haven’t tried magnesium

Goonergirl profile image
Goonergirl in reply to HInerk

I have suffered with RLS since I was a child-now in my 40’s. I have taken all sorts of meds tramadol, gabapentin etc which helped for a short time then it comes back harder. BUT, about 18 months ago I started taking gentle iron (liquid) before I go to bed, and I would say that 5 out of 7 nights are pretty much RLS free-so give it a go, it may surprise you-it certainly did me.

Is there a reason for not wanting to take opioids.? Taking opiates for getting right off your ropinerole, doesnt mean you have to stay on it . There is Gabapentin or Pregabalin as the other options.

kelirock profile image
kelirock

Hello Hlnerk,

I am taking Quinine for RLS. I am not familiar with the medication you have been prescribed, it might not be available in Australia but it is of the same family as the one I have been prescribed which is Sifrol. After being diagnosed by a neurologist with bi lateral RSL of the legs I was commenced on Sirol 1mg daily. This initially controlled the symptoms of RSL beautifully but I started putting on huge amounts of weight (15kg) and the initial dose of 1mg became either non effective or only partially effective after 2 years, so I was prescribed an increase of 0.25mg. This was only partially successful. As a further increase in Sifrol was totally out of the question for me I went to a different doctor who prescribed Quinine which I take daily. It has proved to be 8/10 successful on its own but I still require a small dose of Sifrol 0.25mg daily for complete control of symptoms. Even then, I occassionally have break through symptoms but not to the severity they were prior to commencing medication. I am now trying to monitor what food I am taking to see if any of the food groups irritate the RSL and exacerbate symptoms. Hope this is of some assistance for you.

Dave2468 profile image
Dave2468

I have been using quinine for rls for 6 months and have no problems.

heidle profile image
heidle

My 96 yr old mum drinks a can of tonic water a day for her RLS and it does seem to help. Not always....

involuntarydancer profile image
involuntarydancer in reply to heidle

It breaks my heart to think of a 96 year old having to cope with rls. Does she take any medication for it? I'm not hugely surprised to hear that quinine is only intermittently effective. I notice that doctors seem to be an awful lot more casual about rls in elderlies (even more so than with the rest of us) which I think is scandalous. How is your mother's serum ferritin? Raising iron levels can be very effective.

involuntarydancer profile image
involuntarydancer in reply to heidle

I just saw that your mother has pd which probably means she takes a dopamine agonist such as pramipexole. Depending on how long she has been taking it and what dose she is on it is possible that is affecting her rls. Some on here have had a lot of success with various restrictive diets such as low oxalate, fodmap, anti-inflammatory and most recently vegan and gluten free. Many people swear by magnesium supplements or topical applications. I hope that your mother can find something to improve her symptoms.

gypsy49 profile image
gypsy49

Quinine shouldn't be used for anything but Malaria according to medical reports they've even stopped using it for cramp please do some research x

Franklin123 profile image
Franklin123

Can you tell me how long it took to get to your dosage of ropinirole ? I am on 1.50 mg but some times a little more. My elder sister also has rls mildly, but regularly has gin and tonic in evening which she says helps? How do you get quinine?

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