Ropinrole

[MarkieMoo]

Just been given Ropinrole today to start for Restless leg syndrome, I have cardiac history and mental health, which I've seen on the sheet with the medication, I was wondering if anyone else on here is on this medication with similar issues also other than restless leg

[SueJohnson]

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

NO, NO, NO. Do not start taking ropinirole!

Up to 70% of people will eventually suffer augmentation according to the Mayo Clinic Updated Algorithm on RLS which believe me you don't want because it can be hell to come off it and the longer you are on it, the harder it will be to come off it and the more likely your dopamine receptors will be damaged so that the now first line treatment for RLS gabapentin or pregabalin won't work nor might iron. And one expert believes everyone will eventually suffer augmentation.

It is no longer the first line treatment for RLS. It used to be which is why so many doctors prescribe it but they are not up to date. Instead ask your doctor to prescribe gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 mg pregabalin) [If you are over 65 and susceptible to falls beginning dose is 100 mg (50 mg pregabalin).] It will take 3 weeks before it is fully effective. 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 to 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 split the doses with 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 pregabalin)."

If you take magnesium even in a multivitamin, don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of gabapentin and don't take calcium 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 up-to-date on it atHttps://mayoclinicproceedings.org/a...

Have you had your ferritin checked? If so what was it? If not this is the first thing that should be done for RLS.

When you see your doctor ask for a full iron panel. Stop taking any iron supplements including in a multivitamin 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. You want your ferritin to be over 100 as improving it to that helps 60% of people with RLS and in some cases completely eliminates their RLS and you want your transferrin saturation to be between 20% and 45%. If your ferritin is less than 100 or your transferrin saturation is not between 20% and 45% post back here and we can give you some advice.

Some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, artificial sweeteners, carbs, foods high in sodium(salt), foods that cause inflammation, ice cream, eating late at night, dehydration, MSG, collagen supplements, electrolyte imbalance, melatonin, 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, C, 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.

[MarkieMoo in reply to SueJohnson]

Hi thank you for the reply, so basically I take lansoprazole, Citirizine, Atorvastatin, Aspirin, Bisoprolol and Venlafaxine

[SueJohnson in reply to MarkieMoo]

Lansoprazole is a proton pump inhibitor. I haven't found anything that makes RLS worse but several people on the forum say it does and RLS-UK says most proton pump Inhibitors worsen RLS. It also decreases iron absorption even if taken 2 hours before iron and if taken long term magnesium. Instead take gaviscon advance. Take it 30 minutes after eating, 4 hours before or 2 hours after taking iron Don't take it within 2 hours of taking gabapentin, antihistamines, some antibiotics, beta blockers or steroids.

All statins make RLS worse. Nustendi - UK (Nexlizet ) High cholesterol p 158 (statins)

Nexlizet (Nustendi (UK) is a cholesterol lowering drug that is not a statin, but I don’t know if it exacerbates RLS symptoms. Ezetimibe (Zetia) reduces cholesterol although it doesn't reduce cholesterol as fast as the statins, but according to Chris Columbus it didn't trigger his RLS. And then there are Triglide (Fenofibrate, Fibricor, Lipantil, Lipofen, Supralip) and Bezafibrate (Bezalip) which are not statins which seem safe. 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.

If you do take gabapentin or pregabalin you should be closely monitored as it can raise the bad LDL and lower the good HDL

Bisoprolol is a beta blocker and it makes RLS worse. Some medicines that are safe for high blood pressure are propranolol (Inderal, Hemangeol, InnoPran) a beta blocker that may help RLS, Isosorbide Mononitrate (Monoket, Imdur) which is not a beta blocker nor calcium channel blocker. Other possibilities are: Clonidine (Catapres) an Alpha-2-Agonist used to treat high blood pressure which may help RLS and which also treats insomnia, tenex (Guanfacine, Intuniv), prazosin (Minipress) an alpha-adrenergic blocker that is also useful in managing sleep-related problems caused by PTSD and Tadalafil a vasodilator that in one study completely eliminated RLS. Discuss these with your doctor including side effects. And then there is reducing salt by 1 teaspoon a day nih.gov/news-events/nih-res....

Venlafaxine is an antidepressant that makes RLS worse for many. Safe antidepressants are trazodone and Wellbutrin (Bupropion, Zyban) although the later us hard to get prescribed for RLS.

Citirizine and aspirin are fine. 😀Glad something is?

[MarkieMoo in reply to SueJohnson]

So basically I'm buggered 🤣

[SueJohnson in reply to MarkieMoo]

Hey - they are safe alternatives for all of those! You just need to talk to your doctor to see if the alternatives would be OK for you.

[ChrisColumbus]

Further to Sue's detailed response, UK doctors are not taught about RLS and follow outdated guidance from NICE/NHS.

Follow Sue's guidance on getting an iron test and come back here with the actual numbers - do not just let your doc say 'everything is normal' as they don't know what is normal for RLS - BEFORE starting on ANY meds for RLS.

Also go through Sue's lists of things good and bad and respond to her question about other meds that you are on.

Only AFTER all this you might need meds for RLS. Your doc has already prescribed ropinirole: refuse this and pramipexole and rotigotine. As Sue writes, pregabalin and gabapentin are now first line treatments for RLS - IF drugs are needed at all.

Do come back here responding to Sue's points, but also with any other questions: there is plenty of help here!

[Joolsg]

Seriously? Another useless UK GP who hasn't followed the simple steps needed to review an RLS patient.The following is what GP should have done:

1. Review trigger meds that cause RLS and SAFELY replace (SueJohnson has listed all your triggers & given you safe options). Many people first suffer RLS after starting anti depressants, like you.

2. Take full panel iron tests & raise serum ferritin above 100, preferably 200ųg/L via iron pills every other day or iv iron infusions.

3. If 1& 2 don't work, then start pregabalin or gabapentin at night only.

4. If 3 doesn't work, low dose opioids are required.

Sadly, UK GPs are still prescribing dopamine agonists but RLS-UK are trying to get them relegated to 'end of life scenarios'. They all cause severe drug induced worsening, which your GP should warn you about! And up to 38% will suffer impulse control disorder (ICD). We have many members that have lost tens of thousands to gambling and spending addictions caused by these drugs.

UK solicitors have successfully sued hundreds of doctors for failure to warn about ICD. Did your GP warn you?

If not, go back and explain about ICD and legal action and read RLS-UK in detail to learn about RLS in detail. Ask your GP to do the same.

[MarkieMoo in reply to Joolsg]

No I haven't a clue what ICD is

[SueJohnson in reply to MarkieMoo]

Impulse Control Disorder.

[Joolsg in reply to MarkieMoo]

It's described in my reply. Impulse Control Disorder (ICD).I put up a post about it recently. Very common. And GPs deny any knowledge even though there have been many scientific reports about it and hundreds of legal cases.

Have a look at this post

healthunlocked.com/rlsuk/po....

And do tell your GP, as he may not realise he has been legally negligent in failing to warn you EXPRESSLY about the very high rates of ICD.

[ChrisColumbus]

On the subject of a replacement antidepressant: Sue quite rightly has listed trazodone and bupropion as safer alternatives to venlafaxine, but pointed out that bupropion (which is probably the safest) is difficult to get prescribed in the UK. This is because it is no longer licensed here for depression, but can still be prescribed in some NHS areas by a specialist - usually a psychiatrist - if other antidepressants don't work for you/are not suitable. It might be worth asking.

[Mybella123 in reply to ChrisColumbus]

I am on both of the last comments, I have had restless leg for over 45 years,and over that 45 years I have been to many doctors,and many specialists,I am settled on Buprenorphine,the Neupro patch,and I,m still taking pregabalin 150 mg,I still suffer sometimes. When I have been sitting for awhile,but although taking all these drugs,it is 100 % better than it was many years ago,if I don’t take one of these pills I,m suffering,so I,m stuck,rather take these pills or suffer the consequences of not,I am 76 and I want live a more comfortable life in my later years,if that is what it takes,I will stick to it.try and get up and walk more,my back is bad,so haveing trouble there,but I do try and move as much as I can,A long plane journey is agony,I,m going to have to grin and bare it in a few weeks,but you do the best you can,do not sit too long,,

[DogBella]

You have been given great advice on this form especially from SueJohnson and a few others. Do NOT start Ropinirole. It will drive you crazy. I was ready to jump off a bridge trying to get off of it.

[Sylviet]

If you have mental health issues and are on antidepressants you may still have issues as some antidepressants actually exacerbate the RLS. I just came off Pramipexole and am having withdrawal symptoms so there is no easy answer and it seems like a balancing act. Wish I had better advice but maybe someone on this forum will.