Forum

Quinine - bit scared

I was prescribed this by my doctor yesterday, for night time cramp. I haven’t picked the prescription up yet.

She already warned me it can cause heart arrhythmia (scary stuff!) and to watch out for that, but reassured me it’s very rare.

Then I got unfavourable feedback here, from DrGeoff, whose wife tried it. And finally, I checked the full side-effects for myself, and some of them can be fatal.

Really feeling a bit dubious about taking it, now.

I would be collecting it from the pharmacy later today, all being well (assuming they are open), so my first experiment would have been tonight.

I’m wondering if it would be safer to take the first one on a weekday daytime, in case I have a serious reaction, and need emergency help. It’s a sad reality that emergency admissions on a weekend do not improve your chances…

Can anyone reassure me that they are on quinine, and have found it “the best thing ever”, or something similarly reassuring?

The doctor has said one of the plusses is it can be used on a take-as-needed basis, so I need only do so when the cramps are particularly troublesome. I do not have to let it build up in the system for weeks, before I know if it’s helping.

Tina

I’ve been taking Quinine for leg cramps for a long time (may be masking the leg jump) I do occasionally have tachycardia but i was taken off quinne as a precausion and then put back as it didnt make any diff anf tachy went away on its own.hope ythhis helps

Do you already take magnesium? I only ask because I find 375mg helps a great deal with spasm & cramp and being a beneficial mineral might be worth trying first. I hope you find a decent solution.

Hi Tina I’m with whammel…I take magnessium for the spasticity…I also use the magnessium oil spray. I drink tonic water with quinine in but obviously this is a tiny amount ! All three definitely help. Xx

I’m already doing all the above. Stretches too. S*d all effect, I’m afraid. And it’s gradually getting worse. So I don’t think my doc was wrong to prescribe. It’s just the more I read, the more nervous I’m getting.

I know all meds have risks and side-effects. If you study the detailed list for any of the others I’m on, or have been, it’s not very encouraging either. But I’m feeling between a rock and a hard place. Do I just put up with this, or take something that’s got such scary warnings?

T.

x

Hi Tina

You could take a look at some of the home remedies that people have tried:
http://www.myhomeremedies.com/topic.cgi?topicid=977
and see if any of them work.

FWIW - my wife now uses an electric heating pad on her legs when she first gets into bed, and this seems to work as well.

I would comment that the medical profession seems to treat leg cramps as a separate problem from muscle spasm. I think that looking at anti-spacicity treatments could be an alternative (like whammel and MrsH, above).

Geoff

Geoff, I’m well beyond home remedies, and Baclofen, too, has stopped working, as has Diazepam - i.e. they work slightly, for a while, but not enough to see me through the night. At the moment, I’m getting about four hours’ effect, max, and even that is now only taking the edge off, not fixing it, as it used to. I think I’m going to have no choice but to take the quinine, as it’s having too much effect on quality of life to keep faffing around with ineffectual DIY remedies. I’m doing stretching, I’m taking muscle-relaxants, I’m taking magnesium, I’m having up to three hot soaks a day. But it’s still getting worse. I’ve got mild cramp permanently, moderate cramp at least once a night, and severe cramp (agony, and no choice but to get out of bed) a couple of nights a week. I can’t remember the last time I’ve had sleep unbroken by cramp. It’s a routine occurrence now. Sometimes I can shift, and with luck, it will wear off. Other times, any movement just makes it worsen and spread, so sometimes I go from one foot to both, or from just a single toe affected, to cramping toe-to-groin. All this happens in an instant, so by the time you’ve done the movement that makes it worse, it’s too late to realise you shouldn’t have. Tina

Hi Tina.

I`ve been on quinine for a few years now. To be honest I didnt know they could have unpleasant side effects.

I began on 200mg nightly for restless legs, which drove me nuts in bed.

I needed to have it increased to 300mg to get the desired affect.

I take baclofen for spasms. I still get an occassional spasm in my feet at night. But if I lift my legs manually (cant do it any other way) the spasm eases off.

luv Pollx

Hi Poll,

Thanks for the response. My doctor told me she was required to warn me, though she only specifically warned me about the heart arrhythmia, not the other sh*t that can happen.

So it’s a bit worrying you weren’t told. Though if it was several years ago, the rules might have tightened up since, so perhaps it was OK at the time.

I’ve just found out the pharmacy closes at 1:00, and I’m not over there, so I won’t have to decide 'til Monday at the earliest, now. I suppose that at least scotches my worries about having a violent reaction in the small hours of Sunday morning, when there is least emergency cover. If I take it at all, it won’t be 'til a weekday, now.

I know perhaps it’s a bit paranoid to think like this, but I do worry about being on my own here, late at night, and taking something that I don’t yet know how it will affect me… I know quinine is quite a common prescription for cramp, but I also read it’s been banned for that, in America, because the risks outweigh the benefits. It’s only now supposed to be prescribed for malaria.

Tina

x

Well, you are worrying me now. I`ve never been given any warning about quinine.

Hmmm?

luv Pollx

I should think, if you’ve been taking it years, you’d know by now if it was going to affect you badly. If nothing has happened, then you’re OK!

I’ll definitely be most worried the first time, or first few days. If nothing bad happens, I’ll be much more confident after that.

T.

x

Ive read that one of the possible side-effects is hearing loss.........well Ive been about 90% deaf in my right ear for a few years.

Again…hmmmmmm?

luv Pollx

Isn’t that a possible effect of HSP as well, though? Very hard to ever pin it down, isn’t it? Especially when some of the side effects are among the possible complications of an illness you’ve already got…

IF it was the quinine, would it be likely to affect only one ear? I don’t know, just wondering “aloud”, as it were. I would have thought, if a drug damages hearing, it wouldn’t be discerning enough only to strike one ear. Then again, I don’t know if HSP sometimes strikes only one side, either. If it’s like MS, inasmuch as the effects can be random, it seems possible.

Tina

x

Yeh, you`re right. HSP can include deafness.

It could just be that I was always gonna have some hearing loss no matter what, eh? I said eh?

Actually it does cause me quite a lot of problems. Speaking 1 to 1, as long as the person faces me and doesnt cover their mouth, i`m okay.

In a crowded noisy place, I have little chance of joining in conversation properly. I get fed up of saying eh? and think other folk get sick of repeating themselves too.

I have tried hearing aids and gone to ent with no helpful outcome.

I did go to lip reading classes for a year, when it was free.

Now our adult ed bosses, seem to think lip reading is akin to basket making or drawing ie not essential to normal life. And it is £60 a year. There are no discounts!

pollxx

Do you drink tonic water? It has quinine in it so if you do, you’ve taken it already.

I hate information leaflets as they list every side effect, but notoriously don’t make it clear how likely it is on individual is to have the side effect.

If you want to speak to a pharnacist, there will be one on duty at Sainsbury’s East Filton and Tesco Bradley Stoke. I assume all the other big supermarkets with pharmacies will have a pharmacist on duty until 8 pm today too. If you can’t make it to the store check the store information on the internet and see if you can phone the pharmacy.

I’ve been taking quinine sulphate for a few years as well as drinking tonic water every day. Touch wood my leg and arm cramps are not bad at the moment and I have not had any of the suggested side effects. I really do notice the difference if I don’t take them. I do agree though that some of the side effects sound rather alarming though you will have to weigh up the possible benefits with the risks and make up your own mind !

Hi, from what folk have said, it seems taking quinine tablets and drinking tonic water is not recommended.

pollxx

Hi Tina,

I was on baclofen and was finding that my cramps were getting worse, not better. My neuro recommended that I come off the baclofen altogether as sometimes it can cause a paradoxical worsening of spacticity, especially in the higher doses. Since then my legs have been much better and I now use magnesium 500 mg at night and diazepam as needed if I do get the occasional cramp. My overall daytime stiffness has also improved.

However I certainly wouldn’t suggest you do this without your doctor’s approval first but it may be food for thought…

I can’t help regarding the quinine though

Cheers,

B

Having ben the one who was biased against quinine in the first place, I went back to the BNF (the prescribers bible), and nearly frightened myself witless! Like EllenC I tend to think that information leaflets are written by lawyers, not medical professionals.

Quinine as a treatment for leg cramps has a number of stated side effects (a couple of which are not nice at all).
Quinine as an anti-malarial has a whole lot more (several of which are not nice - or worse - or terminal).
But the list of things that quinine has an adverse interaction with is quite long as well.

I only get leg cramps on occasions, but there is no way I would now try anything but magnesium - but Tina has already tried that.

If you do start on Monday, Tina, is there a friend who can phone you morning and evening just to check you are OK for the first few days. It only took 30 hours (two tablets) for the"confusion" - a stated side effect - to affect my wife very badly, and about the same length of time to go when I made her stop.

Geoff