Struggling with R L S

[TERRIWBA]

Just stated today taking medication Ropinirole but worried it has so many side effects.

[SueJohnson]

You don't want to take ropinirole. It is a dopamine agonist and they are no longer the first line treatment for RLS as up to 70% of people on them will suffer from augmentation which believe me you don't want. When you see your doctor ask for a full iron panel. Stop taking any iron supplements 48 hours before the test and fast after midnight. Have your test in the morning. 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. Instead of ropinirole ask your doctor to prescribe gabapentin or pregabalin. Beginning dose is usually 300 mg gabapentin (75 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. 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 of gabapentin and pregabalin 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) daily." If you take magnesium don't take it within 3 hours of taking gabapentin (it is OK with pregabalin) as it will interfere with the absorption of them and don't take calcium within 2 hours. 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 ropinirole at Https://mayoclinicproceedings.org/a...

[TERRIWBA in reply to SueJohnson]

Thanks so much needed this information

[SueJohnson]

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, carbs, foods high in sodium, foods that cause inflammation, ice cream, estrogen, 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, 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, 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, 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.

[TERRIWBA in reply to SueJohnson]

Thanks Sue you have really helped

[Joolsg]

Sadly, RLS isn't taught at any stage in medical training so your GP will have ZERO knowledge about it or the latest research.Did the GP do full panel, fasting blood tests before prescribing Ropinirole? Raising serum ferritin above 100, preferably 200 resolves the majority of RLS without the need for meds.

Ropinirole is a dopamine agonist and it WILL lead to a worsening of RLS. When that happens, the ONLY option is to withdraw and it's hell. Harder than heroin or crack cocaine withdrawal.

As Sue advises, don't start it. Use this as an opportunity to educate your doctor on the latest, best practice as set out in the Mayo Clinic Algorithm.

As you're over 70, the GP should first raise your ferritin by oral iron or IV iron infusions. He/she should also ensure you're not on meds that trigger RLS ( anti depressants/ anti histamines).

First line treatment is now pregabalin/gabapentin unless there are contraindications or the side effects are intolerable. Low dose opioids are then prescribed.

Learn all you can about RLS because I guarantee your GP has NEVER been taught about it or knows the most up to date research and practice.

mayoclinicproceedings.org/a...

sleepreviewmag.com/sleep-tr...

[TERRIWBA]

Thanks no test of any sort done he didn't seem to know what yo prescribe...only taken 1 not taking any more

[Joolsg in reply to TERRIWBA]

Go back & ask him to do full panel fasting blood tests. Even the outdated NHS & NICE guidance recommend that.Tell your GP to look at this forum & ANY help group on FB & he'll soon realise Ropinirole/Pramipexole/Neupro patch cause severe, drug induced worseningof RLS. That's why they're no longer prescribed by experts.

RLS-UK is trying to get NHS & NICE guidance changed so they reflect the Mayo Clinic Algorithm, written by the world's top RLS experts.

Hopefully your GP will learn about RLS and will start ordering blood tests first and then prescribe pregabalin ir gabapentin as first line drugs.

Over 50% of RLS patients see dramatic improvement after raising serum iron by taking iron pills or getting an iron infusion.

[TERRIWBA]

Thanks for for informatio do appreciate it