At My tether.

[Keila2001]

Hello could I possibly get some advice please. I am currently at the end of my tether. I have had RLS for about 5 years mostly at night but in the last 5 months it has started during the day to the point now it is now with me 24 hours a day and really severe. I can't go out as I cant stay still I have to keep moving. Its so bad I have walked to the shore a few times now . I have tried a lot of meds at the minute dr has me on Ropinirole 2mg at night... it feels at time that it goes into my arms to which my dr says that you can't get it in your arms and it's in my head and you only get it at night. Please please could someone give me some advice.

[ChrisColumbus]

Welcome to your first post on the forum (although I note that you joined in 2020 so may have been reading): you'll find lots of advice here from people who have been through exactly what you have experienced.

What medications for RLS were you on before ropinirole? And what meds are you on now other than rop: many prescribed and over-the-counter treatments make RLS worse. Most doctors don't know this: reply with details for further help.

While waiting for advice to address the ropinirole issue (*see last paragraph*) you should arrange as soon as possible for a full panel iron test to include serum ferritin and transferrin saturation (TSAT) numbers. It should take place in the morning, after fasting overnight (nothing other than water), having not taken iron supplements or multivitamins containing iron for 48 hours before. You must then insist on getting the actual numbers: there's a very wide range of ferritin numbers that a doctor will call 'normal' and most don't know that RLS sufferers need higher levels. We benefit from ferritin levels over 100, preferably 200 or higher. Come back here with the results for advice on supplementation.

If your ferritin is below optimum for RLS you may benefit from raising this by taking tablets or (unlikely in the UK) getting an infusion.

Unfortunately UK doctors (and even neurologists) have not been trained in RLS and rely on outdated guidance from NICE/NHS. Ropinirole, pramipexole and rotigotine are no longer first line treatment for RLS amongst experts - but *DO NOT* suddenly stop taking ropinirole! While ropinirole eventually causes augmentation, which you are almost certainly suffering - meaning that RLS can start earlier in the day and spread to other parts of the body, which most doctors dont recognise - you will need to wean off VERY slowly, but please wait for guidance on this here from people who have been through this such as   Joolsg and   SueJohnson .

Best wishes: you will get over this!

[Madlegs1]

Your doctor is , unfortunately, utterly wrong.

Augmentation is virtually a certainty after dopamine agonists.- Pramipexol or Ropinerol amongst the most common.

It will spread to all parts of the body over a short time.

Change doctors if possible.

Read the article by switalskis (sp?) on suing doctors for wrongful advice.

You have a strong case, but must act quickly.

Good luck.

[Kaarina Administrator]

Here is the link to which Madlegs is referring : healthunlocked.com/rlsuk/po...

[RiversW]

Keila,

I would only add that one of my most disheartening experiences with a neurologist sounds in one way very similar to yours. About 5 years ago when I still lived in Los Angeles I had my first visit with a new neurologist. When I described the sensations in my arms as being the same as the RLS sensations in my legs, she said that can't be RLS. You can't have RLS in your arms. Needless to say I was discouraged by her comments. I knew what I felt and she glibly dismissed those feelings. I found a different neurologist who was more informed about RLS.

It's important, very important to find a neurologist who is educated about RLS or who is at least openminded to learning. When you do, that is when you will get real help from a doctor. Until then, you can get a pretty good education about RLS here and be well informed for your next visit to a doctor.

Good luck and hang in there. There is a light at the end of the tunnel.

Rivers

[SueJohnson]

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

You are 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. This means you need to come off the ropinirole.

First off check if you are on the slow release ropinirole. The slow release ones usually have ER after their name. If so you need to switch to the regular ones. The slow release ones are the equivalent of taking 2 mg twice a day so you will need to take 4 mg a day to equal the slow release ones. You can't cut the slow release ones.

Ropinirole (and pramipexole) are no longer the first-line treatment for RLS, gabapentin or pregabalin is. 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. Since you are suffering so badly I suggest you get .25 mg tables which you will need anyway and increase your dose to 2.25 mg and let your symptoms settle for a day or two. Then 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. Some have used kratom or cannabis temporarily to help. But in the long run, you will be glad you came off it. If that is still too much to reduce, you can get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it.Then reduce by that amount every 2 weeks.

On the gabapentin or pregabalin, beginning dose is usually 300 mg gabapentin (75 mg pregabalin). (Pregabalin is more expensive than gabapentin in the US.) 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 divide the doses on 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 of pregabalin)." 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).

As Chris said you need to get a full iron panel. Improving your ferritin to 100 or more helps 60% of people with RLS and in some cases completely eliminates their symptoms. In addition to the instructions he gave don't eat a heavy meat meal the night before. 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. If they are not, post them here and we can give you some advice. Improving your ferritin, hopefully with an iron infusion will help you with your augmentation.

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...

Meanwhile some things that can make RLS symptoms worse for some people are alcohol, nicotine, caffeine, sugar, 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.

[Keila2001 in reply to SueJohnson]

Thank you everyone for all your advice and support. I was on Pramipexol for a few years before ropinirole. This has really shocked me reading all of this information. Two years ago I husband walked out on me and I lost my house due to me gambling the year before I just couldn't stop. I thought I lost the will to live with all that and the Rls I was at my lowest my mood was so low I tried to take my life. When I come out of hospital they put my Pramipexole up and my dr called me a stupid girl. That is when the feeling in my arms started. But reading this it's starting to make sense now looking back to when I was put on to the Pramipexole it was about 6 maybe 7 months I started gambling. I have am appointment today with the Dr will ask for my ferritin to be checked. I will let you know.

[LotteM in reply to Keila2001]

Others have given you excellent advice, I second all (Chris, Rivers, Sue, Madlegs, Jools). I just want to say I am sorry about your story. And whereas I am not for sueing, I think you should consider seriously. Especially the ‘stupid girl’ part is very belittling.

Also, take your time to sort things out. You WILL get better.

[SueJohnson in reply to Keila2001]

I am so sorry. The dopamine agonists are known to cause impulse control disorders like the uncontrolled need to gamble. Your doctor should have warned you about that, I would definitely sue for damages.

See healthunlocked.com/rlsuk/po...

[Keila2001 in reply to SueJohnson]

I went to Dr this morning and she wanted to put the ropinirole up to 5mg at night but I insisted that I try gabapentin so she agreed but told me to stop ropinirole straight away. The iron was ok she said.

[SueJohnson in reply to Keila2001]

DO NOT stop ropinirole cold turkey. Follow my advice above. Since 4 mg is the maximum ropinirole amount you doctor is very ignorant and it sounds like you should switch doctors. Where are you located? And call and ask for your ferritin number. Doctors will tell you your ferritin is OK, but what is OK for others is not OK for RLS.

[707twitcher in reply to Keila2001]

The link from Sue below takes you to a post by Kimberley Bradfield, an attorney - I would certainly suggest contacting her to discuss your legal options.

[Joolsg]

Best advice is get a new doctor asap. Yours knows zero. As others have advised, the Ropinirole is causing the all day, severe RLS and it has moved to your arms- a classic sign of augmentation.cks.nice.org.uk/topics/rest...

Show your GP this article by NICE. He needs to update his knowledge.

It is shocking that UK doctors aren't taught anything about RLS OR the severe side effects of Ropinirole and other dopamine agonists.

As you have SEVERE augmentation, you have to get off Ropinirole and replace with Pregabalin or gabapentin. Have you experienced any compulsive behaviour? Over spending, over eating, OCD behaviour, gambling or hypersexuality? If so, you have 3 years to take legal action against your GP for failure to warn about ICD. If your GP refuses blood tests, that is breach of duty/negligence and you can take legal action.

Follow SueJohnson advice to withdraw by 0.25mg every 2 weeks, and start pregabalin or gabapentin at night only around 4 weeks before you stop the last dose of Ropinirole. Do NOT let GP switch you to another DA, like the Neupro patch.

Please, please also report the severe RLS and the RLS in your arms via the Yellow Card Scheme. Unless we all keep reporting, the UK medical professionals and authorities do not realise the extent of the problem.

US experts are clear. Everyone on these poisonous drugs WILL experience augmentation. It's simply a matter of time.

bnf.nice.org.uk/medicines-g....

[Nikos64]

It breaks my heart to hear your story and stories from others about Ropinirole, Pramipexole or Dopamine agonists in general.

This is because I’ve been there and suffered like you are so I’m always compelled to reply when I hear stories like this.

You need to switch doctors ASAP! This class of drugs provides some relief initially but eventually they make your condition worse !

Please find a pulmonologist / sleep specialist. They will provide medications that will provide lasting relief that will not cause your condition to get worse! Make sure you ask them whether they have been keeping up because the treatment protocol has recently changed.

Also, getting off ropinirole will be difficult! Please be patient… I was on ropinirole then pramipexole and it took me about 1 month for the worse part and about 4-6 mo to really get over it

Good luck !!

[DicCarlson]

What a nightmare! I am so sorry for your troubling health and malpractice effects. Please follow the link provided by Katrina. If anyone has a case against health care providers it is you! From Wikipedia also "In November 2012, GlaxoSmithKline was ordered by a Rennes appeals court to pay Frenchman Didier Jambart 197,000 euros ($255,824); Jambart had taken ropinirole from 2003 to 2010 and exhibited risky hypersexual behavior and gambled excessively until stopping the medication."

en.wikipedia.org/wiki/Ropin...