Advice please

[Coopersmum]

I thought I was going mad at first, my RLS is horrendous and affecting me at work. Poor and very little sleep, getting confused and making mistakes, forgetting information. The RLS was starting early on a morning and nothing I could do to relieve it. I was taking too many cocodomoI out of desperation. And was physically and mentally exhausted. I am currently taking Ropinerole and the GP had been increasing them as the symptoms were no better and actually getting worse. I found the RLS-uk website after being off work for a few weeks. I read about augmentation and spoke to my GP because I believe this is what I am suffering from. The GP said that my ferritin levels are low and that she couldn't take me off Ropinerole until my iron levels are corrected. I am now waiting for an iron infusion before they will do anything about my Ropinerole. I am still off work and no further forward, just waiting for an appointment for the iron infusion. Then I can only assume they will take me off Ropinerole and try something else. I am desperately worrying about when I can go back to work everything is taking forever. Any advice would be appreciated.

[SueJohnson]

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

There is no reason to wait to some off ropinirole until your iron levels are corrected. That is ridiculous. You can start now.

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.

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.

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 you are off ropinirole for several weeks 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)."

What is your ferritin? 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. Your iron infusion will help to quickly bring it up and this will also help your withdrawal.

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...

Also show it to him because there is nothing in it that says to wait until your iron levels are OK which could take a couple months or even more if the first infusion isn't enough.

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, 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.

[Coopersmum in reply to SueJohnson]

Hi Sue, thank you so much for your advice. I will speak to my GP about the information you have provided. Everything is taking so long, I feel that the lack of understanding by some medical professionals intolerable. When the GP out in a referral for an infusion the hospital refused giving further advice and she has had to write to a Neurologist for him to refer for an infusion. This will take between 8 and 12 weeks. I don't really think that my employer is taking it seriously either.

[SueJohnson in reply to Coopersmum]

While you are waiting you can start taking iron. 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 two tablets of 325 mg of ferrous sulfate or 75 mg to 100 mg 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 a couple months for the iron infusion to slowly raise your ferritin. Ask for a new blood test after 8 weeks.

[Coopersmum in reply to SueJohnson]

I have been taking 200 mg of ferrous sulfate one per day with 80 mg of vitamin c as prescribed for a number of months now. I wasn't told what time of day to take it so have been taking it on a morning. So it sounds like again I have been given the wrong advice. I need to see my GP again as soon as possible and discuss the information you have provided. Thank you so much

[Joolsg]

Your GP has caused this situation through total lack of knowledge. GPs aren't taught anything about RLS or dopamineagonists or how to spot augmentation and treat the patient.So, follow SueJohnson advice.

As your serum ferritin is low and you are waiting for an iron infusion, it will be safe for you to start ferrous bisglycinate supplements now. Take them on an empty stomach, last thing at night, but take every other night as it raises levels faster.

Join RLS-UK, read the website, direct your GP to the website.

Most people on here have experienced augmentation on dopamine agonists.

Experts make it clear that ALL patients on dopamine agonists WILL experience augmentation. It's simply a matter of when, not if.

Your GP should help you through withdrawal Now. Do not wait. An iron infusion could take months AND it won't STOP the augmentation symptoms. It may reduce them slightly.

Have you experienced Impulse Control Disorder on Ropinirole? It causes gambling, impulse sometimes, overeating and hypersexuality. There have now been hundreds of successful UK cases against doctors for failure to warn about this.

Please don't wait. Start the slow withdrawal now. Ask your GP to prescribe tramadol 50mg or oxycodone 10mg for when the RLS flares up at each dose reduction.

Time your withdrawal so you can have 2 to 3 weeks holiday for immediately after you drop the last dose. Withdrawal at that point is brutal. You will get little to no sleep for 5 days and severe, all over RLS. It settles a little over the next week as the replacement med, pregabalin or gabapentin starts to work.

Many of us have been through it. It's hell, but most of us have found a treatment that works.

[Coopersmum in reply to Joolsg]

Thank you so much for your advice. I hadn't experienced any impulse control disorders. But feel totally helpless, frustrated and upset by being given the wrong advice for months.

[Joolsg in reply to Coopersmum]

I know. It is so frustrating and upsetting to realise that most doctors are completely ignorant about RLS treatment.It certainly made me lose all trust and I rely on my own research now.

Even the 'so called' top UK expert is outdated. He refuses iron infusions, saying they cause death ( yes, in the 1960s &70s ), but the newer formulations are far safer.

Perhaps, in the next 10 years, UK doctors might update their knowledge.....