where to next?

[Sanmass]

I have managed to get a face to face with my GP on Monday and wanted some advice. I have recently weaned off of Pregabalin as was not helping very much and I could not suffer the side effects any longer. I don’t know what she will suggest I try now (probably antidepressants, as they have been mentioned before)but I desperately need to be able to sleep and cannot with this condition. Any suggestions what I can ask Dr for? I am in the UK so don’t think Opiods will be considered.

[SueJohnson]

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 ask for a full iron panel. Stop taking any iron supplements 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. If they are not , post them here and we can give you advice.

[Sanmass in reply to SueJohnson]

hi Sue, I got the checks done before I went on Pregabalin, my ferritin was 98.

[SueJohnson]

Another one to try is dipyridamole. It has helped some people on this forum and another forum I am on and has completely eliminated RLS in some. In the winter 2022 edition of Night Walkers, the publication of RLS.org there is an article by Sergi Ferre about dipyridamole discussing the effectiveness of it in a 2 week double blind placebo controlled study showing it completely ameliorated all symptoms. The study was by Dr. Garcia Borreguero movementdisorders.onlinelib... sciencedirect.com/science/a... movementdisorders.onlinelib...

[Joolsg]

Most anti depressants trigger or worsen RLS so if your GP tries to prescribe these refer to RLS UK and NICE CKS guidance which make this clear.The NICE guidance still has dopamine agonists as first line treatment but the guidance is outdated and needs to reflect the Mayo algorithm. Dopamine agonists quickly cause a severe worsening of RLS, known as augmentation so avoid. If GP tries to prescribe Ropinirole, Pramipexole or the Patch ask if they're aware of the high rates of Augmentation and Impulse Control Disorder and the legal cases against doctors.

If pregabalin didn't help, as Sue advises, raising serum ferritin above 100, preferably 200 and serum iron above 60 should be tried before meds.

You may even get an iron infusion, depending on where you're based as it raises levels more quickly than oral supplements.

Opioids are prescribed off licence if your GP agrees. Show them the Mayo algorithm and the Massachussetts Opioid Study & explain UK is years behind best treatment.

Targinact is set out in NICE guidelines but local trusts are trying to block it due to expense. Plain Oxycontin is very effective with average dose of 30mg taken as 15mg twelve hours apart. Ask for a 3 week trial and use the Massachussetts Opioid Study as evidence that Opioids do NOT lead to addiction in RLS unless there's a history of drug abuse. Patients remain on the same low dose for years.

Links attached.

mayoclinicproceedings.org/a...

massgeneral.org/rls-registry

[Sanmass in reply to Joolsg]

thank you joolsg, yes have already been through augmentation some years ago from Ropinerole. Thank you for all the info, I will be sure to let GP see it.

[pennygates in reply to Joolsg]

I'm about to be given medication for my bipolar to help with anxiety and agitation. I suffer more from low mood than hypermania these days and my psychiatrist is thinking more towards a mood stabiliser, as he is anxious to avoid anti depressants because of my RLS. He has given me a leaflet to consider an anti psychotic drug called Aripiprazole. Have you any knowledge of how this might affect my RLS. The psychiatrist isn't keen to add much to my medications, and he is also aware that I'm afraid of any neurological drug after taking Pramipexole for many years. I have augmentation from Pramipexole but don't feel able to tackle a reduction programme right now, because of other illnesses which are affecting me: Crohn's disease and severe arthritis . I'm also taking opioids at a fairly low dose for pain for these conditions, as I'm unable to take NSAIDS, codeine and others. My dose of opioids is 25 mg over the day. Two of these are slow release. 2x5mg, the other 15mg are for breakthrough pain, as required. 333

[pennygates in reply to pennygates]

Sorry I should have asked a new question instead of tagging onto this. Just didn't think .

[DicCarlson in reply to pennygates]

Read the Wiki about aripiprazole - side effects seem to be insomnia, and restlessness.

en.wikipedia.org/wiki/Aripi...

You may find this video helpful - scroll down to see time stamps and watch what is of interest to you.

hubermanlab.com/the-science...

[pennygates in reply to DicCarlson]

Thanks for the information and the links. The videos are good and very useful. It does look as though Aripiprazole might be difficult. However Jools has sent a link. It shows that Aripiprazole works as agonist and antagonist on the D2 dopamine receptors in the brain, which could help RLS. Poses a dilemma for me! It might be worth taking it and finding out.

[ziggypiggy in reply to pennygates]

I take a small dose of a mood stabilizer. My psychiatrist and RLS doctor who prescribe my opiods work together to treat both my mental heath and RLS. They increased my opiod dosage to allow me to take and try mood stabilizers and other antidepressants without the worry of increased RLS symptoms getting in the way. Otherwise, you are limited to just a few RLS safe options which in all honesty are not the greatest of anti depressants. So a small uptick in tour opiod medication may be something you can approach your health team about.

[Joolsg in reply to pennygates]

academic.oup.com/ijnp/artic... not familiar with mood stabilisers but did find a few articles on Aripiprazole. It seems to work as both an agonist and antagonist on the D2 dopamine receptors. So it can help RLS. You will soon know if it helps or worsens the RLS.

I can understand how overwhelming it must be to consider reducing the Pramipexole when you have other health considerations.

I read on here several months ago that someone had found a 'compounding pharmacist' who changed his Pramipexole into a liquid solution and he could then reduce by micro doses over a year to 18 months.

Discuss with your psychiatrist because your RLS will never be completely controlled until you are off Pramipexole.

Another thing you might consider is Low Dose Naltrexone ( but you'd need to stop opioids). LDN is useful for Crohns and it also can be helpful for RLS.

Alternatively, if you slowly reduce the Pramipexole, you could then use Buprenorphine for the RLS and it would help the arthritis as well. A patch would cover the arthritis but there have been reports that it doesn't last the full 5 days for RLS.

It sounds like your psychiatrist is very helpful and he could help set out a reduction schedule for the Pramipexole, over at least a year, and ask your GP to monitor the withdrawal symptoms and increase the opioids to cover the RLS.

The Mayo Algorithm and Massachussetts opioid study sets out the average doses of opioids for RLS. Links above in response to Sanmass.

[pennygates in reply to Joolsg]

Thanks Jools for your continuing support and research. The option that seems to fit with myself is to increase opioids to the suggested levels in the Mayo Algorithm, which will be an uphill struggle with my GP, who has declined a copy of the research by the Mayo Clinic, and their suggested treatment options. He is generally a good GP, but I can't break through the mindset that is prevalent among UK GPs , not to educate themselves and to read up to date research for RLS. My opioids are prescribed for other medical reasons, or I wouldn't have them at all. So to ask for an increase will be almost impossible I fear, although I will try, exhausting as it is. Then to start to reduce Pramipexole with the support of my psychiatrist, and begin with the mood stabiliser Aripiprazole despite my reservations ( possible side effects of restlessness and insomnia driving these reservations). Its worth a try, and my best hope to tackle coming off Pramipexole. Many thanks for your insights and advice.

I have filled in the survey by a Neurological Society which you sent out recently. I didn't hold back on how difficult it is to live with RLS and the lack of medical training for GPs. Hope we see some progress one day.

[Joolsg in reply to pennygates]

Thanks so much. There are so many of us but we are spread over several groups.I suspect the only way to get the medical profession to listen will be an organised protest march outside the RCGPs and the ABN.

Still a long way to go, but the more noise we make, the more articles we get in newspapers, magazines and on TV, the more we raise awareness.

[Heavyd65]

unfortunately one of the best medications that work for me are opiates. And unfortunately they are not being prescribed here in the US because big pharmaceutical companies control what the doctors prescribe. I have been taking Kratom for my RLS and it works. I have suffered years from very little sleep. I take 6 capsules of the Red Mengda and it works within twenty minutes. I started taking gabapentin three weeks ago. In was hopeful that it would work. I’ve decided to stop taking it because I haven’t noticed any improvement. Just another pill with a lot of side affects. People think the the Kratom is some kind of horrific narcotic like morphine. I don’t feel any mind altering effects or any type of euphoria from it. It stops my RLS in its tracks….it works the same receptors as opiates. I think some day a pharmaceutical company will separate the active ingredient in it and make a pharmaceutical pill from it. I honestly don’t feel any side effects from it. It has worked for me better than anything prescribed. I’ve been prescribed Pramiprexil years ago. Unfortunately it takes hours to work. My pain management doctor gave her blessing to use Kratom . She said as long as you don’t have side effects from it and it works for you. Kratom is sold in the US at every smoke shop. A lot people use it for many reasons just like the CBD oil. I’m sure if you google it you’ll find you can buy it on Amazon. Good luck.

[Sanmass in reply to Heavyd65]

I would certainly try Kratom if possible, but it is not legal in UK so would be unable to source it. Thank you

[Bumble34 in reply to Sanmass]

Kratom can be delivered to the UK next day from Kraatje in Holland, no probs.

[Sanmass in reply to Bumble34]

oh that’s interesting, will have a look thank you

[SueJohnson in reply to Heavyd65]

If you only started gabapentin 3 weeks ago, you haven't given it time to work or for any side effects to go away and you probably didn't take enough for it to work.

[Heavyd65 in reply to SueJohnson]

Thank you Sue. I will give it more time.

[Joolsg in reply to Heavyd65]

Did you stop Pramipexole before starting gabapentin?As Sue says, gabapentin takes at least 3 weeks to be fully effective for RLS but won't help if you're still on Pramipexole as the D1 dopamine receptors will be overexcited. Only opioids calm them down temporarily during withdrawal.

There are several RLS Centres of Excellence in the US and most of the top RLS experts are based there. If you see one of them, they will prescribe opioids.

2 members in Florida have recently been prescribed opioids. It is possible and the new CDC opioid decision will make it easier for doctors to prescribe low dose opioids.

I use Dr. Winkelman's Opioid Study at Massachussetts General Hospital to convince GPs here in the UK of the safety and efficacy of Opioids.

Where are you based?

[Heavyd65 in reply to Joolsg]

Thanks for heads up.I still am taking a low dose of pramipexole. I will stop taking it as of today. It’s going on my forth week of the gabapentin. I’ll continue with it. If that would works I could give the Kratom a break. I haven’t been able to sleep for the past few nights. It’s not the RLS it’s ensomnia..I thought it was being caused by the gabapentin. That’s why I was going to stop. I’ll give it another week to see if it improves… thank you for the information!

[SueJohnson in reply to Heavyd65]

Safe OTC options for insomnia include: valerian, chamomile, hops, L-tryptophan, 5-HTP, glycine, and GABA. Some prescription medicines include Ativan and Ambien.

[SueJohnson in reply to Heavyd65]

If you are taking more than .125 mg of pramipexole, don't stop tonight. You need to wean off more slowly.

[Heavyd65 in reply to SueJohnson]

I take a low dose ..25 mg. I hadn’t had a sleep problem until taking gabapentin. Not sure if that’s what’s causing it. I always take 10mg if melatonin and that’s always worked for a long long time. I will stay the course for a few more nights. Thanks for your advice

[SueJohnson in reply to Heavyd65]

Melatonin makes RLS worse for most people. To come off pramipexole, reduce by .125 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. The beginning dose is usually 300 mg gabapentin . It won't be fully effective until you are off pramipexole for several weeks. After that increase it by 100 mg 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 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 daily." If you haven't had your ferritin checked, ask your doctor 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 and 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. 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...

[Jumpey]

I'm in the UK and have been prescribed Codeine ,Tramadol and Morphine for RLS.Good luck with your doc.Don't loose heart.x

[Sanmass in reply to Jumpey]

that sounds promising, will see what Dr says. Thank you