Restless leg syndrome help: I am new to... - Restless Legs Syn...

Restless Legs Syndrome

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Restless leg syndrome help

Frenchfrog67 profile image
16 Replies

I am new to this site and always looking for answers for a cure to this problem which I have been diagnosed 7 years ago I take two ropinirole which is two 1 mg tablets at night also I have 1 tablet of multivitamins with iron which was said that a lot of the restless legs is something to do with lack of iron since my partner suggested taking these tablets I have seen a lot of improvement

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Frenchfrog67
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16 Replies
Pam34 profile image
Pam34

Long may in continue working for you but care with ropinirole. Do not be tempted to increase the dose under any circumstances and read up all you can on augmentation so you are aware if it should happen.

sleepreviewmag.com/2015/02/...

rls-uk.org/augmentation-reb...

Ropinirole or any dopamine drug is the scourge of many people, me included, on this site and withdrawal is horrific.

I don’t want to put you off so if it is working then great, but just be aware, at some point it may start working against you.

Pam

Frenchfrog67 profile image
Frenchfrog67 in reply to Pam34

I have the almanac of medicine at home out of date but it comes in useful about drugs which doctors and chemists have can't remember the proper name it's updated every year what the drug does side effects etc but as I say since I took those iron tablets with multivitamin in them has worked wonders so far

Pam34 profile image
Pam34 in reply to Frenchfrog67

Ok, the maximum recommended dose for ropinirole is now 1mg. Unfortunately you won’t find this documented anywhere yet in the UK. We are way behind the US. Jools, Lotte, can anyone help me in this?

But I’m not telling you to stop the ropinirole, just be aware.

Type in ropinirole and augmentation in the search box on here and you will see how widespread a problem it is and the ignorance of many GPs and even neurologists.

Frenchfrog67 profile image
Frenchfrog67 in reply to Pam34

I am aware of it I started on 1mg and now I upped it two mg myself after discussing it with doctor after finding that 1mg was not strong enough after awhile I was taking along time to sleep but now got no problem and was told by doctor to continue and that if it was wearing off to see her again and maybe try something else so far so good touch wood

Joolsg profile image
Joolsg in reply to Pam34

Dr Buchfuhrer & some of the US experts are strongly of the view that 1mg should be the maximum prescribed dose but a number of international neurologists disagreed with them. Accordingly, In the 2016 consensus study on augmentation, ncbi.nlm.nih.gov/pubmed/274...

the US experts had to compromise on the max recommended doses of dopamine agonists. It appears a lot of "experts" disagree about augmentation as well, probably because they don't see as many patients suffering from it as the US experts.

I choose to follow the advice of Dr. Buchfuhrer, Dr. Winkleman and Dr. Early, all of whom believe 1mg of Ropinirole should be the maximum dose and that it should not be increased.

Pam34 profile image
Pam34 in reply to Joolsg

Thanks Jools. Early start?

Joolsg profile image
Joolsg in reply to Pam34

More like a late finish Pam. Fell asleep at 2.30 but legs went crazy at 5 and still won't settle. I'm doing my chores while it's cooler. Already finished the washing so may do the bathroom! Clearly you're up too. x

Pam34 profile image
Pam34 in reply to Joolsg

Haha yes, but more force of habit. My alarm goes off for work at 5.30 but I retired on Tuesday! If my legs are bad it tends to be between 12-2am but i tend to eat rather than do chores I’m afraid 😟

in reply to Pam34

Congratulations on retirement 😊 You're joining the ranks of the idle - - - , well the idle.

in reply to Frenchfrog67

You might be referring to "MIMs" (Monthly Index of Medical Specilaities) but now doctors also use the "BNF" (British National Formulary). You can acccess either online, or to find out about a drug just google "(drugname) mims" or "(drugname) bnf".

Frenchfrog67 profile image
Frenchfrog67 in reply to

Yes I remember now it's the BNF very good

Frenchfrog67 profile image
Frenchfrog67 in reply to Pam34

I remember now it's the BNF in the book it tells you can take 1mg tablet but also you can take upto 2 mg no more I told the doctor after awhile that it was not working with 1 mg that why I am on 2mg also take quinine tablets tonic water that helps as well

Pam34 profile image
Pam34 in reply to Frenchfrog67

The fact that 1mg no longer works and you have had to increase to 2mg is not a good sign. All I’m saying is beware.

Mum007 profile image
Mum007

I would not take Multivitamins as this is usually the wrong sort of iron. You need to check iron is glass in i multivitamins as this is usually the wrong sort of iron. You need to check iron bisglycinate Which is highly recommended for restless legs. You can get this from Holland and Barrett it is called gentle I am and I recommend taking one capsule every evening on an empty stomach or every other evening.

in reply to Mum007

After all the useful suggestions I got from this forum, a few weeks ago, I take two capsules every other night along with a senokot and a glass of orange. The schedule and the orange aids absorption of the iron and the senokot counteracts the side effect.

Oh, and I take it on an empty stomach, I'm on a diet. I've lost a few kilos, but gained several magnets.

I guess it's working.

Sara_2611 profile image
Sara_2611

welcome/Bienvenue!! I've only heard about Roprinole through this site - I wouldnt be able to take it at all for anything because I have epilepsy & blood pressure & always afraid of negative reactions

I was diagnosed with it in the early 2000s

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