Meds change

[Grumpies]

hi everyone , first post on here . Been reading some of the other posts on here and Pramipexole or lack of it seems to be a theme . I have suffered from RLS for many years now and it has gradually got worse to the point it is now in my arms too. It was reasonably well under control with Pramipexole until it became unavailable and now I’m having a bad time at the moment . I have recently been put on Ropinerole 0.5 mg at a low dose and slowly increasing over the weeks to where I am now on 2mg daily . The doctor said I can increase these further over the coming weeks but I’m feeling so tired since taking them I don’t think they are the right meds for me !.

[CrusoeCortez]

I have found Gabapentin much better. I kept having to increase the dose of Ropinerol. It was a nightmare to come off it though.

[ChrisColumbus]

Firstly, have you had a full fasting iron panel done recently, and if so what were the results? This will indicate whether iron supplementation might help.

Beyond this, I don't know where you are as you haven't fully completed your HU profile, but dopamine agonists (DAs) - pramipexole, ropinirole and rotigotine - are no longer first line treatment amongst experts for RLS. For the majority they eventually lead to augmentation - worsening of RLS. It sounds as though this may have happened to you.

First line treatments are now gabapentin/pregabalin, and/or low dose opioids. But in some countries, e.g. the UK, many doctors and neurologists continue to prescribe DAs.

Read Replies from e.g. Joolsg and SueJohnson about coming off ropinirole very slowly.

[SueJohnson]

It would help our replies to you if you would indicate your sex and country where you live on your profile. You are obviously suffering from augmentation. The signs of augmentation are when you have to keep increasing your dose to get relief, or when your symptoms occur earlier in the day or there is a shorter period of rest or inactivity before symptoms start or when they move to other parts of your body (arms, trunk or face) or when the intensity of your symptoms worsen. Unfortunately this means you need to come off your ropinirole, not increase it.

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. 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. But in the long run, you will be glad you came off it. Dopamine agonists like ropinirole are no longer the first line treatment for RLS. Gabapentin or pregabalin is. (Pregabalin is more expensive than gabapentin in the US.) The 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. 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 or 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. If you take magnesium 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) daily."

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...

Have you had your ferritin checked? Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. If not when you see your doctor ask for a full iron panel. Stop taking any iron supplements including multivitamins that have iron in them 48 hours before the test, fast after midnight and have your test in the morning. 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. ask for an iron infusion to quickly bring it up as this will help your withdrawal.

[Grumpies in reply to SueJohnson]

sorry sue I am a 60 year old male living in tithe uk , spoke to my doctor this morning and she has told me to come off the ropinarole and basically try without any meds !!!. I feel the next few weeks are going to be horrendous ☹️

[SueJohnson in reply to Grumpies]

I would not just stop them cold turkey unless you really want to suffer. I would strongly suggest you follow my recommendation for weaning off them. That will be hard enough. And why does she think taking no medicines is going to control your RLS - that is ridiculous. It's not just suddenly going to disappear like magic. Maybe you need to pay and go private.

[SueJohnson in reply to Grumpies]

You might want to print out the appropriate sections of the Mayo Algorithm to send her if you stay with her.

[Joolsg in reply to Grumpies]

Another UK doctor with ZERO knowledge about dopamine agonists! It's dangerous to stop these drugs cold turkey. Please, please go back to your GP and ask her to look at RLS-UK website, the Mayo Clinic Algorithm and Dr Berkowski website. She may learn the basics.

Report your increased symptoms caused by Pramipexole via the Yellow Card Scheme, otherwise doctors will never learn how these drugs are feeding the disease and making it 1000 times worse.

Go back on the last dose of Ropinirole you were taking and reduce by 0.25mg every 2 weeks. Ask your GP for tramadol 50mg or codeine 30mgbto settle the withdrawal symptoms.

Leaving you with zero treatment for a serious, severe,neurological disease is unacceptable and unprofessional.

Johns Hopkins, one of the RLS hospitals does suggest a 2 week period of no drugs after a 3 week withdrawal from Ropinirole or Pramipexole. If the RLS hasn't settled after the 2 weeks, they then prescribe pregabalin or a low dose opioid.

Other RLS experts prefer a slow titration down from Pramipexole/Ropinirole over 6 months and start replacement meds 3 to 4 weeks before the last drop.

I suggest you go back to the GP and say, RLS-UK website suggests a slow taper down from dopamine agonists. Also do consider a complaint. The leaflets in all dopamine agonists state that they must NOT be stopped suddenly.

[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.

[wyomingquilter]

I read somewhere that ropinerole will be discontinued. I don’t know when or how much longer it will be on the market. The article I read was from the company that makes ropinerole. That’s something to consider about taking ropinerole. I don’t know anything about the other drugs that are available since I’ve only taken ropinerole. I am now in the process of weaning off the ropinerole. It’s not fun.

[SueJohnson in reply to wyomingquilter]

The only thing I found was that the FDA announced that GlaxoSmithKline was going to discontinue making it in 2019 (yes 2019). It is made by a number of other companies so I wouldn't worry about it.

[Joolsg]

Whoever switched you from Pramipexole to Ropinirole is not very knowledgeable or up to date on latest RLS research and treatment. As you were suffering drug induced worsening of RLS on Pramipexole, you'll quickly suffer it again on Ropinirole or the Neupro patch. Experts no longer prescribe these drugs because rates of Augmentation are so high and withdrawal is hellish.Useful articles to show your doctors below.

relacshealth.com/blog/why-a...

sleepreviewmag.com/sleep-tr...

[Grumpies in reply to Joolsg]

Hi Joolsg

I was trialing Ropinerole because my medical practice said Pramipexole which I have been on successfully for years is currently unavailable . I am certain the Ropinerole has worsened my condition and has caused me to feel constantly tired . As I type this it’s 1:30 am and I can’t sleep due to my badly aching calf muscles ! .

[Joolsg in reply to Grumpies]

You mentioned that your RLS had gradually worsened and moved under your arms. That's classic drug induced worsening. Take this as your opportunity to get off these dangerous drugs.Slowly reduce the Ropinirole and ask your GP to help you through withdrawal. Show them the RLS UK website. There is an explanation of augmentation and replacement medicines.

[Enable]

I live in Cambridgeshire and I'm on pramipexole and not had any problems getting it as yet. Just got my monthly repeat a few days ago.

[Springfiel1]

don’t continue with Ropinerole. Nightmare drug. I found l had to keep increasing the dose and the withdrawal was like nothing else. Go to Dr Berkowski on utube. Excellent advice. Also give your Doctor a copy of the Mayo Clinic latest advice. Keep reading. It’s been my experiences GP’s are woefully ignorant if not negligent when it come to RLS . This site will keep you up to speed. Good luck.

You not a grump, you are suffering a god damn awful illness!

[Solarlights in reply to Springfiel1]

I take 4mg of Roprinole, 100 mg Lyrica twice daily, Bupropion Sr 150mg twice daily. This keeps it under control until I get stressed. I did have a healing session with Candace Silvers. This healing is working and I've had some very stressful things going on.You can find her on Facebook. Monthly she has free healings on zoom. Group healings during the week for $35. candacesilversstudio.com I highly recommend her. I've had RLS for 53 years.

[Joolsg in reply to Solarlights]

4mg is the max dose and these drugs are no longer prescribed by experts. Watch for signs of augmentation. Read everything you can so you can start reducing Ropinirole when your RLS no longer responds to Ropinirole.