Medical question: Locum GP has actually... - Restless Legs Syn...

Restless Legs Syndrome

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Histology2020 profile image
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Locum GP has actually listened to me!! Trying me on Ropinorole 250mg one a day and has told me to stop using the Rotigotine 3mg patch. My question: Is it safe to stop using the patch with immediate affect?? I have developed an severe allergy to the patch and its foil like backing. RLS continues to control and ruin my whole life, please advise !!

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Histology2020
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Joolsg profile image
Joolsg

I think that’s a typo. Do you mean Ropinirole 0.25mg or 2.5mg?

If switching from the patch, you need to switch to the equivalent dose of Ropinirole or you’ll suffer severe withdrawal symptoms. So if you were on 3mg patch you should switch to 3mg Ropinirole.

However you mention RLS

Controls & ruins your life so presumably the patch didn’t stop the RLS? Were you on other dopamine agonists before the patch? ( pramipexole).

I suggest you look at the pinned post on Augmentation top right and watch Dr Early talking about augmentation on the main RLS UK website. If it sounds familiar you should consider getting off all dopamine agonists ( very slowly) & ensure serum ferritin is above 100, preferably 250.

There are better meds for RLS.

Histology2020 profile image
Histology2020 in reply toJoolsg

Hi my apologies, 250microgram Ropinirole, x1 a day can increase after 2-days. Feritine levels 47 GP says thats normal?? Put me on Ferrous sulfate 200mg x3 daily. Have tried almost every tab available before patch, but nothing works. Have severe RLS legs and arms day and night. :(

Joolsg profile image
Joolsg in reply toHistology2020

Ok - your GP clearly not familiar with RLS or the side effects of the meds.

You will get severe withdrawal by dropping 2.75mg of DA so ask your GP to prescribe 3mg Ropinirole in 0.25mg tablets.

You say you’ve tried every pill and nothing works.

If you’ve been taking dopamine agonists at the same time as other pills it’s likely you’re suffering augmentation and that’s why nothing else works.

Could you tell me what you’ve been taking and the dose?

Ferritin needs to be above 10, preferably 250 for RLS even though anything above 15 is ‘normal’ for others.

Raising ferritin resolves RLS in 60% of RLS sufferers so odds are in your favour. However, taking iron supplements 3 times a day isn’t the best way to raise levels. Studies have shows a chemical called Hepcedin blocks absorption to the brain so to fool it, take iron tablets once (not 3 times) EVERY OTHER NIGHT. Link attached.

pubmed.ncbi.nlm.nih.gov/319...

I suspect you have been suffering augmentation so read the link and watch the video by Dr. Early on the main RLS UK website.

rls-uk.org/news/augmentation

When you have the 3mg of Ropinirole, you can then start to slowly reduce the dose by dropping 0.25mg every 2 weeks.

When you are down to 0.75mg, ask your GP for replacement meds like pregabalin. Increase pregabalin by 25mg every 2 days up to 300mg. Pregabalin takes 3 weeks to take full effect.

You will probably still suffer difficult withdrawal symptoms ( most of us do) but once off Ropinirole and all dopamine agonists, the pregabalin should become effective and give you coverage.

Learn all you can by reading all the recent posts and replies ( especially from Manerva).

Histology2020 profile image
Histology2020 in reply toHistology2020

Hi Joolsg, i appreciate your help. The previous 2nights have been horrendous, so im back on the patch and will have to put up with the skin irritation.

Madlegs1 profile image
Madlegs1

They are both dopamine agonists. The real issue is the dose equivalence.You need to check that with your Dr or pharmacist.

I'm sure you have been given an equivalent dose, but it's no harm checking. To be sure,to be sure!😝

If that's the case, then no need for alarm.

We get too many flucklebucks on this site.

Hope the change works out for you.

Nasty rash!

Your statement "Have severe RLS legs and arms day and night. " strongly suggests you are suffering "augmentation". This is caused by taking a DA = dopamine agonist (e.g. rotigotine or ropinirole) over a period of time.

Since it's the DA causing this, then the best treatment is to stop taking the DA, any DA.

Unfortunately it's not easy to do this as severe withdrawal effects can occur.

Also unfortunately, the locum has replaced 3mg rotigotine (extended release) with ropinirole 0.25mg (immediate release). You should have been given a dose of ropinirole equiavalent to the dose of rotigotine. A quick check of the conversion chart suggests that you needed about 1-5 times as much ropinirole as you had rotigotine i.e. at least 4mg.

Your locum then has put you in danger of suffering severe withdrawal effects by giving a massive reduction of DA dose.

A typical regime for weaning off ropinirole is to reduce it in steps of 0.25mg every 2 to 4 weeks.

It seems your locum has reduced it by about 3,75mg overnight!

John_naylor profile image
John_naylor

I think Joolsg made a typo error there, it should be, for an RLS sufferer, Ferritin 100+ (not 10!).A GP will say Ferritin is normal if it’s greater than 15, for us it needs to be above 100, ideally up to 250 but that normally requires an infusion.

Good luck

John

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