I'm new here

[Ohbrother_ion]

I' taking 2 1mg of Ropinirole 3 times a day & I'm still having restless legs, especially ar night, I sleep 2/3 hours a night, going crazy here, so I'm gonna call to see if they can give me a higher dose.

[Jelbea]

Hello and welcome. You appear to be on a very high dose of ropinerole and this could be causing your problems. Do not raise it further. Some of the more knowledgeable members will be able to advise you what to do and I am sure will be along soon. Best wishes

[Ohbrother_ion in reply to Jelbea]

Thank you

[Graham3196 in reply to Ohbrother_ion]

Try another doctor and ask them about their experience with RLS.

[Elffindoe]

You are taking well above the maximum dose of ropinirole and this is causing you to suffer from a condition known as augmentation.

I don't have time to write more at this time. I'm sure you'll get mote responses.

You need to REDUCE the dose of ropinirole and possibly stop taking it altogether.

In the meantime read more about augmentatoon on this site.

Try typing augmentation in the search box.

[Ohbrother_ion in reply to Elffindoe]

I take 2/1mg/3 times a day of ropinirole

[LotteM in reply to Ohbrother_ion]

So you said. Total of 6mg a day. The official maximum is 4mg a day. Experts advise that it should rather be 1mg.

Also, the fact that you apparently need it 3x a day seems to indicate that you have daytime symptoms, one of the telltale signs of augmentation. Augmentation is a paradoxical worsening of the RLS symptoms, caused by the medicines that are supposed to relieve these symptoms. Especially dopamine agonists (DAs) run a high risk of augmentation, and ropinirole is one of the DAs.

As Elffindoe wrote, reducing your dose is tue way to deal with augmentation. However, reducing the dose will temporarily increase your symptoms. And there may be other withdrawal effects. Thus you have to go very slowly.

Please do some reading and come back with questions after you have done so. Augmentation is THE most frequent topic on this forum and there are ample replies with advises how to go about it.

Please Stay in touch. We're here to listen and help by sharing our experiences.

[Jelbea]

Hello again - I see the top dose of Ropinerole for restless leg syndrome is 4 mg. daily usually given in one dose. You are well above this and as Elffindoe says do read up on augmentation on this site. Others will advise soon but it looks as if you will have to very slowly reduce and withdraw this treatment whilst starting something else. As I say I am not an expert but you will get good advice here.

[Elffindoe]

As Lotte has pointed out your dose or ROP is 50% above the official maximum and 6 x what's advised.

Insomnia plus daytime symptoms = augmentation.

There are three things yoiu are recommended to do to treat the augmentation.

One : Ask your doctor for blood tests for serum iron, transferrin saturation (TSAT), ferritin and haemoglobin.

If your doctor reports that these are all "normal" then get the result (exact number) for ferritin.

a) If ferritin is below 75 then start takiing an oral iron supplement.

b) if it's between 76 and 100 ask about getting an IV iron infusion.

For somebody with RLS you may benefit from raising your ferritin level to at least 100 and better still over 200.

Two : Identify and if possible eliminate any aggravating factors you may have. The main ones are other medications used for other conditions.

These include, most antidepressants, sedating antihistamines (neuroleptics, some anti-emetics, cough medicines, anti-allergy meds or sleep aids), proton pump and H2 inhibitor antacids, beta blockers and others.

Alcohol, nicotine, sugar, caffeine and other stimulants should be avoided.

Diet may be a factor in RLS.

Three : slowly reduce the dose of ropinirole. A suggested schedule is to reduce in steps of 0.25mg (or less) and no less than once every 2 weeks. This should help reduce withdrawal effects.

The ropinirole can be replaced with an alpha 2 delta ligand, either gabapentin, pregabalin or if you live in the US, gabapentin enacarbil.

This is a UK site, but there are members from many countries and it's a good idea to state where you live. There is UK specific information I can give you, but you can only access it within the UK.

However you may find this link helpful

mayoclinicproceedings.org/a...

[Birdland]

Many of us on this site have had to come of of ropinirole. It can be a very difficult process but in many cases a necessary one. If you should decide to embark on this journey just know you are not alone. Please ask for support if need be.

[JPZora]

Hello, Oh, I feel your pain! I was on 3 mg. of Ropinerole at night and I was having miserable symptoms, mostly during the day. I happen to know Dr. Winkleman from my school days, and he was kind enough to speak w/ me on the phone. He said that the Ropinerole was most likely CAUSING my symptoms. I found out he was right.

He suggested an appointment w/Johns Hopkins. I did a telemedicine call w. Dr. Mark Wu. He directed me to CUT DOWN the Ropinerole dosage GRADUALLY.. He also suggested iron supplementation--I'm taking ferrous sulfate, 65 mg. 3 X per day, try to do it on an empty stomach, and I add a little Vitamin C to get that ol' iron speeding into my brain. He also upped my Gabapentin--I THINK he said to take 600 mg. 4X per day.

The good news is, the reason I don't remember exactly what he said was that my symptoms are so SO much better. I would call them mild at this point. Now I take 1 mg. of Ropinerole at night along w. 300 to 600 mg. of Gabapentin. I think for me the iron supplementation was hugely helpful.

Good luck to you, Ohbrother_Jon. There is hope!

[Elffindoe in reply to JPZora]

Thanks for this, that really is very interesting. I think the main thing that can be concluded from what was recommended to you was that it was successful.

I guess you'd have to say, and I'd agree, that I'm not in any position to challenge what any doctor advised.

However, for the sake of other readers, there are a couple of things about this which apparently contradict what's been advised.

These I've taken from credible authoritative sources.

Firstly, the usual way in which gabapentin is used for RLS is in one or at most 2 doses a day.

The starting dose is 300mg. This can be built up at the rate of 300mg every 5 to 7 days approx.

For RLS this is normally one dose at night.

Once a "effective" dose has been achieved, then usually, at that point, no further increase is made.

If more than 600mg is needed, then it can be of some advantage to split the dose in two.

The maximum dose is 2700mg.

Hence, to clarify 600mg FOUR times a day seems ridiculous for RLS. This seems more appropriate for nerve pain or epilepsy.

Secondly, and it's really quite surprising how the latest research into iron therapy doesn't seem to have got accepted. Surprising since iron therapy is so common.

Iron is quite toxic, especially in it's pure form. If there is too much unbound iron in the blood it can eventually be fatal. The main thing that could cause this is if too much iron is absorbed from the intestines. This could overwhelm the body's capacity to deal with it.

Luckily, normally, the body has a mechanism for preventing this. It is a hormone called hepcidin.

The main function of hepcidin is to STOP iron being absorbed. Hepcidin levels are influenced by blood iron levels, ferritin/transferrin saturation.

Several pieces of research show

- taking doses of oral iron in excess of 60mg is more likely to trigger the release of hepcidin, thus preventing further absorption.

- one study showed that once released hepcidin remains active for 24 hours. Another showed a single injected dose of hepcidin remained active for 72 hours.

The implications of this are twofold

1) by taking a lower dose of iron, more will actually be absorbed

2) by taking a dose less often e.g. once every TWO days more will actually be absorbed. Up to 50% more.

Taking iron bi-daily is better than daily.

Unfortunately it appears there are still doctors prescribing high doses of iron up to 4 times a day. This appears riduculous and largely ineffective.

[Elffindoe]

I'm not sure that it could be said that anything is 100% effective, hence always work.

Opioids are however the gold standard for RLS.

Whether anybody should or can switch straight to an opioid is another matter.

The main obstacle is getting a prescription. There are no organisations which recommend opioids as a first line treatment only as a treatment for refractory RLS.

I guess the reason for this is that IF things go wrong the potential harm from opioids is relatively greater than for first line meds.

Seems sensible if a med is causing augmentation then switch to another first line med. If or when that fails then opioids are an option.

Perhaps another reason for not rushing into an opioid is to delay the worst scenario. Currently, if or when an opioids fail, what other option is there?

[Elffindoe]

Hi N I'm not in disagreement really with any of your helpful suggestions.

No I'm not a strong supporter of the pharma industry, nor am I strong supporter of the food supplement industry!

Just a technical point about naloxone. I have heard some ppl benefiting from this so nothing really against it.

However, it's not an opioid, it's an antinarcotic, or antiopioid. It can be used in higher doses to treat opioid overdose.