RlS help please

[Whymelord]

Hi,haven't been on here for a while but I have been reading all comments and advice and still suffering from this unbearable syndrome. I've been advised to try Quinine Sulphate and just wondered if anyone found it helpful?

[Madlegs1]

Very out of date advice. Used to be advised to even drink tonic water-- which often doesn't even have any quinine at all, and even if it did, one would have to drink a few swimming pools of the stuff. In that sense, very effective for preventing rls, since one would be so busy going to loo to be bothered by rls.😜🙄

Seriously- NO. It might even affect your lill old heart in a bad way.

[Whymelord in reply to Madlegs1]

😀thanks for your reply.im busy enough running to the loo without making it worse.i did try drinking the tonic water ,complete waste of time and money, don't really believe at this stage of my life that there is an actual cure.im 76 and suffering from RLS for 20 years or so,have bought and tried all sorts,I'm on pramipexole, can't see myself stopping it as the advice on this forum suggests.😱

[Madlegs1 in reply to Whymelord]

Only need to stop Pramipexol if it is augmenting, otherwise absolutely no need to stop it.It is a very effective treatment for RLS.

Unfortunately it has a bad press because of augmentation.

If you feel it is not working, and are tempted to increase the dose, then you are augmenting.

[Whymelord in reply to Madlegs1]

I'm on 0.18mgs,2 times a day,is that a lot

[Madlegs1 in reply to Whymelord]

Yes-- that is quite a large dose. Have you been increasing it recently?Are you certain about the amount? The normal dose is 0.088mg and multiples of that- in UK/ Ireland.

0.25mg is reckoned to be tops for RLS. Could be a lot more for Parkinson's sufferers.

Perhaps you could clarify that.

And also ,why you need to take it twice a day. Do you get the jitteries all day otherwise?

I'm going to beddy byes now, so will answer your reply in the morning, if someone else doesn't get there before me!!!😜

Meantime, you could check out Augmentation. Probably a pinned post at the bottom of this page.

Cheers.

[Whymelord in reply to Madlegs1]

Hi,I have checked and it is 0.18mgs.pramipexole and yes I did increase by half a tab.about a week ago.as I told Effindoe, a year ago my GP gave me some Ropinirole, this was an over the phone chat,no help whatsoever.im going to have to prepare myself for weaning off Pramipexole,😱thankyou for your help.

[Elffindoe]

Firstly, I believe years ago quinine was used to treat night cramps. I don't know how effective it was, but I believe Drs prescribed it for RLS because they interpreted RLS as night cramps.

The two are entirely unrelated.

Although generally it appears that most Drs remain ignorant about RLS, things have advanced a little. Now and again however members mention quinine prescribed or advice to drink tonic water. It's actually rubbish.

Just to clarify the dose of pramipexole you're taking.

The dose of pramipexole is often identified in a confusing way.

The drug comes in the form of pramipexole dihydrochloride. Once it gets into your system it splits into pramipexole and dihydrochoride. Both of these have mass, measured in miiligrams (mg) or micrograms (ug).

Pramipexole is known as the "base" and pramipexole dihydrochloride is called a "salt".

The mass of the salt = the mass of the base plus the mass of the rest.

Tablets for RLS come in the form of either 0.125mg or 0.25mg SALT.

Taking away the dihydrochloride these same tablets contain either 0.088mg (88ug) or 0.18mg (180ug) of the base, i.e. pramipexole.

Hence some people know their dose in base values and some in salt values.

I used to take 0.75mg, that is 3 times 0.25mg tablets, (salt). This is the same as 540ug base, 3 times 180ug.

This was actually a massive dose, although still only the official UK recommended maximum. RLS experts now suggest a maximum of 0.25mg (180ug) daily. Research shows dose over that considerably raise the risk of augmentation.

Two times 0.18mg (180ug) is twice what is advised.

It's OK, if you're happy with the drug, to continue taking it.

However since you say you're still suffering and are asking about quinine then it's quite obvious that the pramipexole is causing you augmentation.

Put that another way, your current suffering is being caused by pramipexole.

I note you say you can't see yourself stopping it and apologies in advance for writing this bluntly, but if you don't stop it, then nothing else is going to help your current suffering. It will probably get worse.

Put another way, if you want to relieve your suffering then you NEED to stop taking pramipexole.

You've probably read lots about this on this site and if you need more personalised suggestions on how to stop taking pramipexole then you can get help..

If you choose to continue taking pramipexole I can only say there's no help for you.

It may seem like a high wall to get over to stop taking pramipexole, but on the other side is a better place.

If your hand was causing you agony and you could smell ut burning, then you'd take it out of the fire. The agony is augmentation, the fire is pramipexole.

[Whymelord in reply to Elffindoe]

Hi,oh my Goodness you seem really well informed about this medication, thankyou for sharing, about a year ago I explained to my GP how I was feeling regarding Pramipexole and the fact it wasn't helping anyhow,not surprisingly he consulted his computer, he gave me a weeks supply of Ropinirole,didn't explain why, didn't tell me whether to stop the Pramipexole, just overall a dismal ,over the phone consultation. I didn't take the Ropinirole,maybe I should have because I'm not getting any ease from Pramipexole. Madlegs suggested I m probably augmenting if I have increased my dose lately which I have.

[Madlegs1 in reply to Whymelord]

Elfindoe has answered for me. I agree with all he advises.You have a long road ahead of you.

Good luck.

[Whymelord in reply to Madlegs1]

Thankyou for your advice,don't know what I would do for help if I didn't have this forum to turn to.

[Elffindoe in reply to Whymelord]

I'd say you're almost certainly suffering augmentation, one is the fact that you are taking pramipexole twice a day. I can only guess is that's because you get symptoms earlier in the day if you don't. This is a classic sign of augmentation.

Furtrhermore, you need to be aware, and so does your doctor, that ALL dopamine agonists cause augmentation.

That is pramipexole, rotigotine and ropinirole.

To suggest changing from pramipexole to ropinirole is like telling you to take your hand out of a fire and putting straight back into another.

The best remedy for augmentation is to stop ALL dopamine agonists.

If your doctor did as you say then not only did they act untehically, I'd say they were dangerous. I'd either report this doctor and/or change to another. Their conduct is appalling

[Whymelord in reply to Elffindoe]

I believe your right but I don't believe there's any Doctor in Derry N.I that would be any better.From a very young age I've needed Iron,I'm taking Gentle Iron but have never had my ferritin level so that's something I intend to do.what do you think of Gababentin,would be grateful for your opinion.

[Elffindoe in reply to Whymelord]

Gabapentin or pregabalin are the recommended standard replacements for dopamine agonists.

In fact they are now the FIRST medication recommended for RLS as the risk of augmentation is significantly lower.

Gabapentin is equally effective as pramipexole for somebody taking it as a first medicine. However, for somebody who has previously suffered augmentation it may not be as effective.

In this case, there's no predicting who will benefit from it and who won't, but overall more people get some benefit from it than those who don't.

You just have to try it and see. It worked for me.

THere are a couple of things abouyt ti which may be misleading.

Firstly, unlike dopamine agonists or opioids, gabapenbtinm does not work immediately.It may take some weeks.

The other thing is that itnis generally accepted that gabpentin does not countyeract dopamine agaonists withdrawal effects.

Thus, it is best to start gabapentin before reducing and stopping the dopamine agonist and continue taking it for quite a few weeks after completeley stopping the dopamine agonists, even if, at first, it doesn't appear to be working.

The action of gabapentin/pregabalin is different from the action of the doapmine agonists. This is becasuethere are two neurotranmitters involved in RLS, dopamine and glutamate. RLS is hence due to a dopamine dysfunction AND an excess of glutamate.

Dopamine agonists correct the dopamine dysfunction, (at lkeast at first) but do little or nothing about the excess glutamate and gaboentinisnthe other way roiund.

That is why a side effect of the dopamine agonist can be restlessness and insomnia whereas gabepentnin can relieve insombnia and anxiety.

[Whymelord in reply to Elffindoe]

Again my appreciation for your advice.

[Pepper163]

I have taken Ropinerole that helped but I maxed on the medication......now I have iron transfusions...currently lasts for 2 months...ask your PvP for a measurement of Ferritin

[Runedrun26 in reply to Pepper163]

How much ropinerole were you taking and for how long

[SueJohnson]

If you do decide to stop, be sure to follow the advice on this forum of how much to reduce every 2 weeks.

[Whymelord in reply to SueJohnson]

Thankyou I will,not sure though what tha advice is,where can I find it please

[SueJohnson]

Elffindoe says: "A typical strategy is to cut 0.125mg tabs in half you can reduce the dose in steps of 0.0625mg. If you only have 0.25mg tabs, I suggest you ask your pharamacist for the smaller tablet.

Reduce no less more often than once every two weeks.

If you reduce by any more than this or more often, it will shorten how long you need to stop completely, but it will mean withdrawal effects are worse."

[Whymelord in reply to SueJohnson]

Oh thank you soo much.im on a mission now,just hope I'm strong enough to persevere.

[Runedrun26 in reply to Whymelord]

Good luck