ropinerole opps

[Sandalsforever]

My husband has been weening himself off of ropinerole for over 6 months. He got down to 4 mg (2 mg twice a day) from 8mg going down .25 mg every 2 weeks. Never had an issue until last month. About 1 month ago he realized he was took the wrong pills for a week - was taking 8 mg a day for 1 week, when he went back to 4 mg daily he has been having augmentation all hours of the day and night. He is staying on 4 mg but it is horrible, he doesn’t want to go back up on ropinerole. Gabapentin doesn’t work for him. What might be the best solution. Fyi he is taking iron with vit c and his iron levels are good. His kidney function is 20% with a transplanted kidney so he must be careful with some drugs.

[SueJohnson]

Try just going back up a little bit like 25 mg or 50 mg.

[Joolsg]

He has gone straight into withdrawal. He can either stick it out, and it will settle in around a week, or he can add 0.5mg or 1mg and then start the tapering again.Gabapentin does NOT work while he's on Ropinirole because the drug-induced worsening overrides any effects of Gabapentin.

Once completely off Ropinirole, pregabalin or gabapentin may work well.

As your husband has kidney disease, he will have reduced iron and that worsens RLS. Speak to his doctors about iron supplements or an iron infusion.

[Sandalsforever in reply to Joolsg]

it’s been a month and he still has the symptoms but maybe he should go back up for a short period of time

[Joolsg in reply to Sandalsforever]

It's a difficult decision because he has to get off Ropinirole if he ever wants relief. Sometimes, reducing the dose, rather than increasing, can have a paradoxical effect. I reduced from 4mg to 2mg very quickly and the RLS settled so much I was tempted to stay on it. But the last 2mg was hellish.

Perhaps try dropping 0.25mg and if it stays really bad, go back up to 5mg and then start reducing again.

Can he access opioids to help settle the withdrawals?

Raising serum ferritin above 100, preferably 200, and serum iron above 60 can also help reduce augmentation and withdrawal symptoms.

An iron infusion is the quickest way to raise levels, so do ask his kidney specialist again if an iv iron infusion of Injectafer is possible.

[DogBella in reply to Sandalsforever]

I don't want to sound discouraging but it took me an entire year to rid that drug from my body. He may need additional help for the pain. Check with the doctor as to what he can safely handle. I knew I needed to get off the Ropinirole so stuck it off for a year. Finally I feel I am getting my life back.

[Sandalsforever in reply to Joolsg]

he did speak to his kidney doctor about iron and he can take some iron supplements which he is taking the maximum amount now, but I think the biggest issue is the withdrawal.

[Plight]

Why does he want to quit ropineole

[ChrisColumbus in reply to Plight]

See below

[Plight]

I have taken this for a long time and it's the only way I can sleep. Am I missing something?

[ChrisColumbus in reply to Plight]

In the majority of RLS sufferers dopamine agonists eventually lead to a worsening of RLS by a process called Augmentation:

"Augmentation is a complex and poorly understood phenomenon that is characterised by the earlier onset of symptoms - around the time of the next scheduled dose of the drug used to treat RLS – and is associated with an increase in the overall severity of symptoms of RLS. The condition appears to start at a faster rate when one is resting and often the upper limbs and trunk (with or without the head and chin) may be involved, in contrast to the beginning of the problem when legs are the main limb involved. Augmentation can happen within weeks of starting dopaminergic drugs. It should not be confused with drug tolerance, where higher doses of a drug are needed to maintain the same effect.

Augmentation rates appear to be greater the higher the dose of any given drug and the longer the duration of treatment. For Pramipexole and Ropinirole, this occurs in about 40% to 70% of patients during a 10-year period or at an annual rate of 8% per year during the first 8 years of use. Rates may be lower with the Rotigotine patch, but only where it is used as first dopaminergic treatment. It is for this reason that, in the UK, starting treatment with a dopamine agonist and/or levodopa should be avoided as the standard treatment strategy. Severe Augmentation may lead to a state of utter exhaustion, characterised by sleeplessness, confusion, headaches, severe symptoms of RLS, as well as constant agitation and suicidal ideation. Opioids are not known to cause augmentation but there have been reports of augmentation with Tramadol. Low body iron stores (as measured by serum ferritin) is also a risk factor. Levels below 100mg per litre increase the risk of augmentation.

If augmentation is mild, the drug dose may be split, but if augmentation is severe, the drug should be tapered down very slowly. Dopamine agonists should never be discontinued abruptly as serious withdrawal effects can occur. "

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

"Dopamine agonists (Ropinirole, Pramipexole, rotigotine patch) are no longer first line treatment amongst experts due to the high risk of Augmentation (drug induced worsening of RLS) and Impulse Control disorders. If you are on any of these medications, you should arrange a review with your doctor to discuss augmentation and, if the drug has lost effectiveness, to discuss a slow taper and a switch to another medication in another class of drugs. Withdrawal from dopamine agonists can be very difficult and traumatic and will require careful monitoring.

Alpha 2 delta ligands should, when not contra indicated, be tried as first line treatment. Gabapentin and Pregabalin are usually administered in the evening. Gabapentin is not easily absorbed above 600mg so split doses two hours apart may be required to enhance absorption and efficiency. Magnesium supplements can affect absorption and are best taken two hours before gabapentin. Gabapentin should be started at 300mg (100mg for over 65) and increased every few days. Average dose is 1200-1800mg. Pregabalin is more easily absorbed and can be taken in one dose. starting dose is 75mg (50mg for over 65) and the average dose is 150-200mg. Gapabentin and Pregabalin can take up to 3 weeks to become fully effective and common side effects of drowsiness, dizziness, unsteadiness, oedema, weight gain usually resolve after 6 to 8 weeks. Side effects can include depression and suicidal ideation and should be monitored, especially at higher doses."

From: rls-uk.org/medical-treatments

[ChrisColumbus in reply to Plight]

I see that you're new to this forum. Are you aware that various prescribed and over-the-counter medications can trigger/exacerbate RLS:

"MEDICATIONS TO AVOID

A number of medications can make RLS worse. In particular, anti-nausea drugs and sedating antihistamines can block the brain’s dopamine receptors, increasing the symptoms of restless legs. Antidepressants that increase serotonin and antipsychotic medications can also aggravate the condition. Let your doctor know if your restless legs symptoms worsen after you take a new medication. A change in dosage or a change to a different medication may help. Below we have listed a number of medications which our forum users suggested made their RLS worse. Please note that this list is not exhaustive and while we have been advised that they have made RLS symptoms worse for some people, this may not be the case for you.

In particular, anti nausea drugs and sedating anti histamines can block the brains' dopamine receptors, increasing the symptoms of restless legs. Anything containing pseudoephrine or phenylephrine should be avoided.

Cold and Flu remedies and Anti-Histamines: Common culprits include: Night Nurse, Day Nurse, Nytol, Actifed, Avamys, Benadryl (Acrivastine), Chlorphenamine ( Piriton), Contac, Coricidin, Fluticasone, Rhinolast (Azelastine hydrochloride), Sinutab, Sudafed. Note that many cough syrups may contain antihistamines, especially if they are recommended for cold or flu symptoms. Always try to choose non-drowsy options.

Anti-depressants: Many people living with RLS also live with depression and consequently are prescribed anti-depression medication. RLS is also common in two conditions that often co-occur with depression: ADHD and PTSD. However some anti-depressants can actually make RLS symptoms worse. If you are prescribed anti-depressants and live with RLS, we recommend you monitor your RLS symptoms to see if your symptoms worsen after starting anti-depressant medication. If so, speak to your medical practitioner to see if you can be prescribed an alternative medication. Trazodone and Bupropion are both RLS safe alternatives.

Anti-psychotics: Most anti psychotics worsen RLS.

Selective Serotonin-Reuptake Inhibitors (SSRIs) and Serotonin and Norepineephrine Reuptake Inhibitors (SNRIs):

Citalopram (Cipramil), Duloxetine (Cymbalta), Venlafexine (Efexor), Escitalopram (Cipralex), Paroxetine (Paxil, Seroxat), Fluoxetine (Prozac), Nefazodone (Serzone, Dutonin, Nefadar), Sertraline ( Zoloft, Lustral), Dapoxetine (Priligy), Fluvoxamine (Faverin), Vortioxetine (Brintellix).

Tricyclic medications: Amitriptyline (Tryptizol), Clomipramine (Anafranil, Imipramine (Tofranil), Lofepramine (Gamanil), Nortryptiline (Allegron), Amoxapine, Desipramine (Norpramin), Doxepin, Trimipramine, Imipramine, Mirtazapine ( Zispin), Protriptyline, as well as others, have been suggested as making the symptoms of RLS worse.

Antacids: Most Proton Pump Inhibitors worsen RLS. Omeprazole, Lansoprazole, Pantoprazole, Rabeprazole, Esomeprazole.

Anti Nauseates: Discuss any anti nauseates with your doctors before surgery as many, including prochlorperazine or metoclopramide) will trigger RLS during and after surgery. Safe alternatives include Odansetron ( Zofran), domperidone or granisetron hydrochloride."

Also from: rls-uk.org/medical-treatments

[Brenda48 in reply to ChrisColumbus]

I am quite exhausted just reading your posts but they have been SO helpful, many, many thanks! As soon as I can get an appointment with my GP I will show him your information but as you have said so eloquently, most doctors don’t know what you are talking about so it’s pot luck getting any help! Even a neurologist I visited prescribed Mirtazapine although I specifically told him I had RLS, he said it would not affect them! Boy was he wrong!I have never felt so bad, dizziness, confusion, double vision, headache, you name it ! Then I was told I had suffered a mini stroke and I would have to take Statins and other medications! Armed with your knowledge I feel that I can attend an appointment and put my case with confidence, (once I get an appointment, ), the TIA was found last Friday and I am still awaiting an appointment at a Stroke Unit !!! Merry Christmas!! 🎄

[ChrisColumbus in reply to Plight]

And have you had a fasting full iron panel blood test to measure your serum ferritin and transferrin saturation? The majority of RLS sufferers will benefit from a serum ferritin level of over 100 ug/L, even better towards 200 ug/L, and if your levels are below this you will probably benefit from iron supplementation or an infusion.

[Sandalsforever in reply to ChrisColumbus]

Yes he has but because he has poor kidney function, he can only have a limited amount of iron. 100 Ug/l - 115 is about the highest level he can be at

[ChrisColumbus in reply to Sandalsforever]

Understood (but my query about iron was addressed to Plight)

[Plight]

What wonderful info. I take Adderall and Cymbalta. I have noticed that my RLS increases earlier than before and it has expanded to other areas of my body. I was accused of "tweaking" recently. I assumed that I had acquired a tolerance. 4 am and I am on this forum so obviously not much is helping. What medicine should I request? I don't do well with gabapentin

[ChrisColumbus in reply to Plight]

I fortunately don't have to take any drugs for RLS and so am not the best person to advise you (and I've also got to go to a meeting...). I hope that one of the other much more experienced people on here will advise you further on medications: look particularly for answers from Joolsg and SueJohnson

[SueJohnson in reply to Plight]

Have you had your ferritin checked? If so what was it? 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. When you get the results, ask for your ferritin and transferrin saturation (TSAT) numbers. 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.

And that brings us to your withdrawal because you do need to come off ropinirole since you are augmenting. 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 a low dose 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.

You said you don't do well on gabapentin, but I don't know what you meant by that so I will still include gabapentin here. If you meant you had side effects you couldn't live with, then you could 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. If you can't take either than a low dose opioid like buprenorphine would be your next step.

On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (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. After that increase it by 100 mg (25 mg pregabalin) 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. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. (You don't need to divide the doses on pregabalin) 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 1200 to 1800 mg of gabapentin (200 to 300 mg of pregabalin)." If you take magnesium even in a multivitamin, take it at least 3 hours before or after taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and if you take calcium don't take it within 2 hours for the same reason (not sure about pregabalin).

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...

Meanwhile 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 including HRT, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, eating late at night, stress and vigorous exercise.

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. Keep a food diary to see if any food make your RLS worse.

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.

Take your adderal in the morning and it should be out of your system by night so it doesn't interfere with your sleep.

There are only 2 antidepressants that are safe for RLS if that is what you are taking the cymbalta for. Wellbutrin and trazodone. Trazodone also treats anxiety and insomnia. Wellbutrin is hard to get in the UK. Don't just stop the cymbalta - discuss with your doctor. If you are taking it for something else, let me know and I may have a safe substitute.

By the way it would really help us to give you advice if you would indicate on your profile what country you live in and your gender.

[707twitcher]

I’m transitioning off Pramipexole. I just got an Rx for buprenorphine and it is a huge help. My doctor doesn’t have any experience with RLS, and was uneasy about the Rx initially. But providing her with articles found here (about the Mayo Clinic new RLS algorithm, about buprenorphine and augmentation) were a big help. Fortunately she’s willing to learn and experiment. Cannabis also helps me, though I understand that it may not be for everyone.