no help

[Percypickle]

hi I’m new here so if I put anything on that I shouldn’t I apologise. My gp & neurologist haven’t got a clue . I have been on ropinerole for years I’m now on 6 mg every night which does most of the time work , however they want me off it , tried to put me on pramipexol I reacted badly to it I’ve also reacted very badly to gabapentin in the past . I’m feeling lost when it starts rsl I am in a living hell as I’m sure are all of you . Any advice would be very much appreciated x

[ChrisColumbus]

Welcome to the forum.

First off, have you had a recent fasting full panel iron test measuring serum ferritin and transferrin saturation? RLS sufferers often have low brain iron and supposedly 'normal' ferritin levels need to be raised to combat RLS. Doctors generally dont know this. See this:

rls-uk.org/_files/ugd/b0a19...

Secondly, are you taking any other prescribed or OTC meds which could be triggering RLS/making it worse:

rls-uk.org/medications-avoid

Thirdly, you may have read here or elsewhere that dopamine agonists - ropinirole, pramipexole and rotigotine - are no longer recommended for first line treatment of RLS because of the dangers of augmentation (making RLS worse) and impulse control disorders. Even NICE CKS guidance has been updated recently, so your doctors should NOT be trying to move you from your already criminally high dose of ropinirole (the max recommended daily dose for RLS is 4 mg) to pramipexole.

You need detailed guidance from others here on coming off the ropinirole VERY slowly - your doctors will probably not be competent on this either! See this

rls-uk.org/_files/ugd/b0a19...

- and on switching to a gabapentinoid or a low dose opioid.

When you say that you reacted very badly to gabapentin what was your experience? How much did you take, what time of day did you take it, how long did you try it for, were you still taking ropinirole at the same time?

It is possible that gabapentin or pregabalin may not work after years on ropinirole, so you may need a low dose opioid. But you'll get much better advice from e.g. Joolsg and SueJohnson.

[Percypickle in reply to ChrisColumbus]

Hi yes gaba I was given for shoulder pain violently sick migraine just horrible prank after 2 days did the same thing I’ve just been given iron as I’m low my other meds are , atoravastatin , escitalipram , do hydra codine, 3 inhaylors . OTC mullin , origarno, Mac Pro for eyes, condriatin , magnesium. I’m taking 6 mg because 4 do not touch me . However I really would love to get off this med having read up on it x

[ChrisColumbus in reply to Percypickle]

If you read that link on medications to avoid that I gave you'll see that virtually all antidepressants - including escitalopram - make RLS worse for most: trazodone and bupropion are generally safe, although the latter is quite difficult to get prescribed for depression in most NHS areas.

You'll also see that statins - particularly in my experience atorvastatin - make RLS worse for most. In my case FAR worse. Doctors tend to say that there are no alternatives to statins, but you'll read in that link that there are several. I got my Oxford based consultant and GP to switch me to ezetimibe which was effective (if slower working than the statin)

[ChrisColumbus in reply to Percypickle]

As to the need to take more and more ropinirole to 'help' RLS that's a classic sign of augmentation. This will only get worse. Coming off and switching to an alternative med is difficult but can be done. Download and read that piece on DA withdrawal that I linked to, but wait for further advice from Joolsg , SueJohnson and others who have far more experience of drug treatments than i do (I'm lucky enough never to have taken meds for RLS)

[Joolsg in reply to Percypickle]

The atoravastatin and escitalopram are RLS triggers. When did your RLS start?

We often see patients experience RLS shortly after starting anti depressants like escitalopram. See my detailed reply.

[Percypickle in reply to Joolsg]

My rls is inherited, I’ve had it as long as I can remember my depression more recent. I will copy your reply if you don’t mind ? Up until rop I have tried various things bought various things it’s always been on going . I have various issues including long Covid ! I also have not faith or trust in doctors x

[Joolsg in reply to Percypickle]

And quite right too.Your RLS is very severe and getting worse purely because of Ropinirole.

These dangerous drugs have now been relegated to 'end of life scenarios' by the AASM guidance. And UK NICE cks guidance has changed their guidance to follow the AASM.

RLS-UK has campaigned for years to.get RLS taught to doctors.

As a result of recent adverse publicity in newspapers and on TV - finally the Royal College of General Practitioners has agreed to add RLS to the GP curriculum from August 2025.

Have you experienced Impulse Control Disorder? Overeating, overspending, gambling or hypersexuality? It affects 1 in 5 patients on dopamine agonists.

There have now been hundreds of successful legal actions against UK doctors for negligence for failing to warn of the very high rates of ICD.

[Percypickle in reply to Joolsg]

no I haven’t had any of those I would like to thank you for the time you have given me today x

[HappyGreenBean in reply to Percypickle]

The low mood/depression can be caused by lack of sleep, increase in RLS. Be patient with yourself. There's a lot of advice and helpful guidance here. As you go through things, learn more, address any iron deficiency you may have and getting on to the right treatment you may find your mood improves.

[Joolsg]

First - get rid of your useless, negligent GP and neurologist.I despair at the total lack of knowledge.

Any doctor who increases Ropinirole to 6mg and tries to switch you to another dopamine agonist needs to go back to school.

There is a lawyer who wants to bring a test case for clear negligence against UK doctors who fail to recognise and treat drug-induced worsening of RLS (augmentation).

You are an excellent candidate.

Here is her email.

She will act on a no win/no fee basis.

It is appalling that lawyers know more about RLS and how to treat it properly than most UK doctors.

Could you tell us the neurologist's name so we can add to our 'bad specialist' list?

There are only around 10 UK neurologists who are up to date on RLS.

[e-mail]

Augmentation has been widely known about since 2008.

The medication leaflets expressly mention it.

Here's the correct treatment:

1. Arrange full iron panel, morning, fasting blood tests. Raise serum ferritin above 200ųg ideally via iron pills every other night or infusions.

2. Review & safely replace all medications that cause or worsen RLS. Main culprits are Anti depressants, sedating anti histamines, cough & cold meds, diuretics, statins, beta blockers, diuretics and PPI gastric meds.

3. If 1 & 2 don't help- start pregabalin or gabapentin at night only.

4. If 3 doesn't work- start a low dose opioid.

Ropinirole and Pramipexole are no longer prescribed for RLS because they worsen the RLS symptoms over time. That's what's happening to you.

So- find a new GP and neurologist. Or ask your GP to up date their knowledge and help you through withdrawal.

The withdrawal schedule is set out on RLS-UK website under Useful Resources.

Start now. Drop 0.25mg every 2 weeks. It will take you at least 6 months to get off such a criminally negligent high dose.

You will need an opioid to settle the increased RLS at each dose reduction.

We can recommend one of the 'good' doctors. Where are you?

Show your GP the RLS-UK website, the new NICE cks guidance which advises AGAINST all dopamine agonists, the Mayo Clinic Algorithm and the new AASM guidance.

All links below.

rls-uk.org/useful-resources

mayoclinicproceedings.org/a...

aasm.org/new-guideline-prov...

[Percypickle in reply to Joolsg]

Thank you you are all so knowledgeable here & very kind x

[Joolsg in reply to Percypickle]

We all learned the hard way after suffering severe augmentation and our GPs & neurologists knew ZERO.Many nembers of the forum have spent years researching RLS & following the top experts in the USA.

And sadly, many of us have lost trust in the medical profession.

[HappyGreenBean]

Agree with Jools 100%. You need the right team to support you through this. RLS is a horrible condition, made worse by medications that shouldn't be prescribed and Drs who don't take the time to learn about the condition or treatments.

Very sorry you're dealing with this, think many if not all of us have at some point. You'll get through this, you just need to be a bit proactive now to get the ball rolling in the right direction.

Good luck! You can do this, look through the forum and you'll find many that have.

[SueJohnson]

Welcome to the forum. You will find lots of help, support and understanding here.

I agree with the others. Let me give you my usual advice which repeats much of what they say but expands a little on it.

4 mg is the maximum dose of ropinirole so you are on 1 an a half times that amount and by definition are suffering from augmentation.

Ropinirole (requip), pramipexole (Mirapex) and the Neupro (rotigotine) patch are no longer the first-line treatment for RLS, gabapentin or pregabalin are. They used to be the first-line treatment which is why so many doctors prescribed them but they are not uptodate on the current treatment recommendations.

First off check if you are on the slow release ropinirole. The slow release ones usually have ER or XL after their name. If so you need to switch to the regular ropinirole because the slow releases ones can't be cut if needed.

To come off ropinirole reduce by .25 mg every 2 weeks or so. You will have increased symptoms. You may need to reduce more slowly or with a smaller amount. Wait until the increased symptoms from each reduction has settled before going to the next one. You will suffer and may need to increase your opioid temporarily to help out with the symptoms especially as you near the end. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it.

What did you mean by just horrible prank?

Since gabapentin gave you migraines you should try pregabalin. Although it is basically the same drug except you don't need to divide the doses, and the side effects are basically the same, some people find that the side effects that bother them on one don't bother them on the other.

The beginning dose is usually 75 mg pregabalin. Start it 3 weeks before you are off ropinirole although it won't be fully effective until you are off it for several weeks and your withdrawal symptoms have settled. After that increase it by 25 mg every couple of days until you find the dose that works for you.

Take it 1-2 hours before bedtime as the peak plasma level is 2 hours.

Most of the side effects will disappear after a few weeks and the few that don't will usually lessen. Those that remain are usually worth it for the elimination of the RLS symptoms. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 200 to 300 mg of pregabalin."

Have you had your ferritin checked? If so what was it? Also what was your transferrin saturation (TSAT)? This is the first thing a doctor should do for RLS. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not ask your doctor for a full iron panel. Stop taking any iron supplements 48 hours before the test, don't eat a heavy meat meal the night before and fast after midnight. Have your test in the morning before 9 am if possible.

The chances if you're doctor said you are low on iron is very good that your ferritin is low but you do need to be tested. And depending on your results you may need an iron infusion to quickly bring it up and which will help your withdrawal.

What iron have you been given and how many mg?

Take your iron with 100 mg of vitamin C or some orange juice since that helps its absorption. Also take Lactobacillus plantarum 299v as it helps its absorption. And you can also take apo-lactoferrin which also helps its absorption. Ferrous sulfate is fine for most people, but if you have problems with constipation, iron bisglycinate is better.

Take it every other day, preferably at night at least 1 hour before a meal or coffee or tea and at least 2 hours after a meal or coffee or tea since iron is absorbed better on an empty stomach and the tannins in coffee and tea limit absorption.

If you take magnesium, calcium or zinc, even in a multivitamin take them at least 2 hours apart since they interfere with the absorption of iron. Also antacids interfere with its absorption so should be taken at least 4 hours before the iron or at least 2 hours after. Don't take your iron tablets before or after exercise since inflammation peaks after a workout. Don't take turmeric as it can interfere with the absorption of iron or at least take it in the morning if you take your iron at night. If you take thyroid medicine don't take it within 4 hours. It takes several months for the iron tablets to slowly raise your ferritin. Ask for a new blood test after 3 months.

When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers ferritin and transferrin saturation (TSAT) numbers and reply back here with them. If your ferritin is less than 100 or your transferrin saturation is less than 20 ask for an iron infusion to quickly bring it up as this will help your withdrawal. If you can't get an infusion, let us know and we can advise you further.

Check out the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment and refer your doctor to it if needed as many doctors do not know much about RLS or are not uptodate on it as yours obviously isn't or s/he would never have prescribed a dopamine agonist at Https://mayoclinicproceedings.org/a...

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, estrogen without progesterone and sometimes even with it, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin although it doesn't for all, eating late at night, stress and vigorous exercise. It is a good idea to keep a food diary to see if any food make your RLS worse.

Some things that help some people include caffeine, moderate exercise, weighted blankets, compression socks, elastic bandages, masturbation, magnesium glycinate, fennel, low oxalate diet, selenium, 5 minute shower alternating 20 seconds cold water with 10 seconds hot water finishing with hot water for another couple of minutes, hot baths, distractions, CBD, applying a topical magnesium lotion or spray, doing a magnesium salts soak, vitamins B1, B3, B6, B12, D3, K2, if deficient, and potassium and copper if deficient, massage including using a massage gun, vibration devices like therapulse, using a standing desk, listening to music, meditation and yoga.

Many medicines and OTC supplements can make RLS worse. If you are taking any and you list them here, I can tell you if any make RLS symptoms worse and if so may be able to give you a safe substitute. I have a list of more than 300 medicines and OTC supplements that make RLS worse and have safe alternatives for most of them.

[SueJohnson]

As the others have said statins make RLS worse for most.

Nexlizet (Nustendi ) is a cholesterol lowering drug that is not a statin, Ezetimibe (Zetia) - reduces cholesterol although It doesn't reduce it as fast as the statins, however don't take it if you have diabetes and then there is Bezafibrate (Bezalip) if you are not is the US. Nexlizet combines ezetimibe with bempedoic acid. And there is Fenofibrate which seems safe. Berberine may help if it is mildly elevated. You might want to discuss these with your doctor. A more difficult way to reduce cholesterol is to go vegan. My husband lowered his cholesterol from 221 to 131 this way.

The advice on the anti depression you were given is correct.

The hydrocodone should help with your withdrawal and you may need to increase it especially as you get near the end.