new to forum and thanks

[Sparrowhawk43]

hi, I discovered you in the middle of the night and am so relieved to find I am not the only person with this, tho sorry others are also suffering…

my doctor prescribed me ropinirole in January and it initially worked but my overeating went crazy and I have been tapering off it- my first night without last night… I didn’t know about augmentation but that is exactly what happened to me… and symptoms are terrible again…

I asked my doc when I went to discuss coming off the ropinirole if they could test me for iron but they just tested cholesterol etc and obvs that was fine!

does anyone know if floradix has enough iron in it to make a difference? Or should I try Stronger supplements?

Also I have adhd and am wondering about links with rls and this and how dopamine affects both… I have cut caffeine but coffee really helps my adhd…

Thanks all

[SueJohnson]

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

Floradix has only 10 mg of elemental iron and you need 65 mg. If you take blood thinners, iron binds with blood thinners, potentially reducing the effectiveness.of the blood thinners and of the iron so check with your doctor. Otherwise, take 325 mg of ferrous sulfate which contains 65 mg of elemental iron, the normal amount used to increase ones ferritin, or 50 mg to 75 mg (which is elemental iron) of iron bisglycinate with 100 mg of vitamin C or some orange juice since that 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 tumeric 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.

Testing for your ferritin is the first thing your doctor should have done. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. When you see your doctor insist on a full iron panel. Stop taking any iron supplements including in a multivitamin that has iron in it 48 hours before the test, don't eat a heavy meat meal the night before, fast after midnight and 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 transferrin saturation to be over 20% but less than 45% and your ferritin to be at least 100.

First off check if you are on the slow release ropinirole (pramipexole). The slow release ones usually have ER or XL after their name. If so post back here as the advice will be different.

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 or you may be able to reduce more quickly. 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.

If you already reduced by more than .25 mg I would go back up and start over.

Ropinirole and pramipexole 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 it but they are not uptodate on the current treatment recommendations. The 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.)]

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 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. 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). According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin (200 to 300 mg pregabalin)."

Meanwhile 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, oestrogen (estrogen) including HRT, 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, 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.

[Sparrowhawk43 in reply to SueJohnson]

Thanks so much, that’s so helpful, way more than I got from my gp… lots to get my head round especially the going back on ropinirole as last night was my first night with no tablets, I’d initially thought the rls was a side effect of Prozac which doc gave me for menopause anxiety symptoms, but I’m not sure if it is a side effect or just a coincidence. Thanks again🙂

[SueJohnson in reply to Sparrowhawk43]

Prozac will also make RLS worse. The only safe antidepressants are Wellbutrin (zyban) and trazodone. Wellbutrin can be hard to get in the UK so ask for trazodone. Don't just stop it. You will need to wean off it, although if you are switching to wellbutrin or trazodone you might be able to switch directly. Consult your doctor on this. S/he might want you to taper down while simultaneously starting Wellbutrin or trazodone.

[Sparrowhawk43 in reply to SueJohnson]

Thanks, i weaned off Prozac after talking to the doc, (was on a really lots dose 10mg) so am seeing how I get on. I felt it was the Prozac that made rls worse but doc said it wasn’ta known side effect… seems like I’ve been fobbed off totally by them

[Joolsg]

Coffee really helps my RLS. So if it doesn't trigger your RLS, keep drinking it.

There is a link with ADHD and Ropinirole will increase dopamine in the brain and that cause Impulse Control Disorder in susceptible patients. As you have ADHD, you are already susceptible to impulsive behaviour.If your GP failed to warn you about ICD on Ropinirole, that is breach of duty and negligence. We have members that have lost homes, marriages, jobs because Ropinirole had caused gambling, impulse spending or hypersexuality.

So it's good you're tapering off it. Go slowly, 0.25 mg every 2 weeks.

Educate your GP by referring him to NHS and NICE guidance. They're outdated, but they do make it clear that testing for low serum ferritin and iron etc is Essential.

So go back. Ask for full iron panel, morning, fasting blood tests. Tell your GP that a dopamine agonist is not suitable for someone with ADHD because of the VERY high rates of Impulse Control Disorder.

Your GP should prescribe pregabalin or gabapentin.

Show him RLS-UK website which sets out the latest treatments and doses and timings.

[Sparrowhawk43 in reply to Joolsg]

Thanks so much this is really helpful! I have not been diagnosed with adhd yet but it is on my records that I have requested a referral for assessment. So scary all the impacts in peoples lives of prescribing wrong medicines , thanks again 🙂

[Eryl]

You do not need medication to calm the symptoms of RLS if you tackle the causes. Most of the time the causes are foods that cause inflammation. This inflammation can affect any part of the body but when it affects the nerves it can cause all sorts of problems like RLS, anxiety, depression, fibromyalgia etc. The most inflammatory foods are refined sugars and starches. There are lists of inflammatory foods on the internet.

[Sparrowhawk43 in reply to Eryl]

Thank you, I suspect I have a lot of inflammation caused by years of historic stress, I have recently changed job so hope the stress will reduce, just need to manage the symptoms until this settles

[Sparrowhawk43]

thanks to all who replied,

I’ve now had an in-depth conversation with a GP who is supporting me to come off ropinirole slowly and has prescribed me ferrous sulphate as she said that over the past few years my iron has never been above 23, so whilst I’m not anaemic it’s not a great level.

She will do a blood test in a few months to see if it’s made a difference and I will monitor my symptoms. I’ve managed all week just on .25 of ropinirole, so hoping I can stick with it, I’m still restless but managing to sleep.

Also spoke to hrt doc today and we will hold off any new medication until I know what’s happening…

Cheers