Any recommendations?

[Twitchytheclown]

I've had RLS as long as I can remember (as have quite a lot of my siblings) but since I've got older, 48 at the moment, it's got beyond a joke and even the pramipexole doesn't work anymore. I already take iron tablets so not sure if that's the issue but I'm getting it every time I sit down for any length of time. Can anyone recommend anything that may help?

[Joolsg]

Hi Twitchy

I suspect Pramipexole is the culprit. What dose are you taking and how long have you been taking it?

It causes Augmentation- look at the pinned post. It’s the most common reason people visit this site.

If it’s augmentation the only solution is to get off pramipexole very, very slowly and start alternative meds like pregabalin.

Read all the recent posts and you’ll see info on checking iron levels, ensuring you’re not on meds that worsen RLS like anti histamines and most anti depressants.

[Twitchytheclown in reply to Joolsg]

Hi,

Thanks for reply, I'm on one 0.18mg at night but as I said they no longer seem to have any affect. I had never heard of augmentation and it was never mentioned by my doc who just sort of said try these and to be honest I'd take anything to get a decent night's sleep! Forgive my ignorance but what happens if you just go cold turkey with the pramipexole?

[Joolsg in reply to Twitchytheclown]

Don’t even think about it! Hell.

Are you here in the UK? If so, your doctor should have discussed the serious side effects with you. They can cause Impulse Control Disorder ( gambling, excessive shopping, hypersexuality) and there have been several class actions on this in the USA and here in Europe. Your doctor should also have discussed Augmentation ( although a short read of the posts on here will make you aware that doctors know nothing about this disease or how to treat it properly.)

Please read the pinned post on Augmentation and watch the video on RLS UK main page with Dr Early explaining what it is and how it manifests.

Pramipexole stops working, you get RLS earlier in the evening, it becomes more intense and can move to hands, arms and any body parts,

You have to reduce very, very slowly over a minimum of 3 months while starting to take an alternative med like pregabalin or an opioid like oxycontin.

The more you educate yourself on this condition and the latest expert treatment- the better you’ll be able to help yourself.

Here in the UK there are very few neurologists with the expert knowledge and GPs are not taught about it at medical school.

Read all Manerva’s replies to posts over the last week and it includes everything you need to know about dopamine agonists and how to get off them.

Lots of us have been through it and are in a better place off these drugs.

[Twitchytheclown in reply to Joolsg]

Many thanks Joolsg, yes I'm in UK and am hoping to speak to doc next week now I'm armed with a lot more information

[Joolsg in reply to Twitchytheclown]

rls-uk.org/

This is our website. Spend some time reading all the info. Remember your GP will very likely know nothing. Mine was appalling and like so many others, negligent. So be forewarned- do not let them increase the dose! Also if they suggest other dopamine agonists like Ropinirole or the Neupro patch- you will suffer exactly the same problem in a short time.

[Whymelord in reply to Joolsg]

Hi Jools, you mentioned a video and a Dr. EARLY,where do I bring it up on this forum?

[Joolsg in reply to Whymelord]

rls-uk.org/

The main page of our RLS UK website has lots of very useful and helpful information.

[Whymelord in reply to Whymelord]

Thank you, Im learning, I had a look at the videos.I asked my gp to give me pregabalin, told him Im on this very informative forum which it informed me that changing from pramipexole to ropinirole was futile as they would cause the same problems. Needless to say he was a bit miffed that I knew more than he thought. Said he wouldn't give me pregabalin, didn’t say why, so prescribed ropinirole, OMG,

[Hidden in reply to Whymelord]

Firstly, it may do no good whatsoever to quote to a GP what you've read in this forum.

I suggest you change your doctor. They are not only ignorant but arrogant and their conduct is unethical.

If you live in N Ireland you may wish to report them to the General Medical Council.

You do not HAVE to take ropinirole. For your GP to coerce you (e.g. by refusing to prescribe a valid alternative) to take it is actually illegal (law of informed consent).

You can try to gain a GPs cooperation in prescribing pregablin by referring them to the UK NICE guidance on the management of RLS. (Note the links do not work outside the UK).

This guidance states

Pregabalin can be prescribed for RLS

Excerpt

"First-line recommended drug options for people with frequent or daily symptoms are either:

A non-ergot dopamine agonist (pramipexole, ropinirole, or rotigotine), or

An alpha-2-delta ligand (pregabalin or gabapentin — both off-label indications)."

and

Dopamine agomists, pramipexole, ropinriole and rotigotine cause augmentation.

Excerpt

"Before commencing drug treatment, ensure the person is aware:

Of possible treatment complications relating to dopamine agonists. In particular, augmentation, loss of efficacy, and the risk of impulse control disorders (ICDs)."

URL

cks.nice.org.uk/topics/rest...

Augmentation is caused by dopamine agonists

Excerpt

"Augmentation is a major complication of dopaminergic treatment for restless legs syndrome (RLS) [Garcia-Borreguero, 2011; Garcia-Borreguero, 2013; Garcia-Borreguero, 2016]."

The treatment for augmentation is to STOP all dopamine agonists and switch to pregabalin or gabapentin

Excerpt

"If there are no apparent exacerbating factors, and symptoms are severe, stop the causative drug. An option is to switch to a non-dopaminergic drug such as an alpha-2-delta ligand,"

URL

cks.nice.org.uk/topics/rest...

Prescribing ionformation for pregabalin

Excerpt

"The use of pregabalin for restless legs syndrome (RLS) is off-label.

Initial dose: 75 mg in people aged under 65 years and 50 mg in people aged over 65 years.

Titration: maximum recommended daily dose for RLS is 450 mg"

URL

cks.nice.org.uk/topics/rest...

Do not let this doctor get away with their unacceptable conduct.

[Whymelord in reply to Hidden]

Hi, thank you so much for this information, Im not intending to take the ropinirole, I'm gonna speak to another gp at my surgery in the hope they will take more notice of what I'm saying,the gp who prescribed ropinirole is the most dismissive of all the doctors at the surgery I won't even talk to him in future, can't understand why he refused to give me pregabalin.

[Hidden in reply to Whymelord]

You might consider complaining about this doctor. It may turn out OK for you, but how many other victims might there be of his ignorance and arrogance?

[mmb8083 in reply to Twitchytheclown]

My doctor also never mentioned augmentation to me or any of the other awful side effects of the DA drugs. Seems to be a common thing though. Doctors fail to tell you what’s to come after handing you that script for a DA med. it’s almost like you are on your own. So thankful for all the great advice on this forum

[PramAddict in reply to Twitchytheclown]

It's going to be hell weening off it but definitely don't do cold Turkey.

I weened off last year and took me about 3 months.

Problem is that the pregabljn didn't work and the other meds didn't either. Back on pramipexole.. seems to be only one that I can deal with.

Good luck...

[Josana13 in reply to Joolsg]

Hi Joolzg, I asked my doctor if he could prescribe Buprenorphine and he said that it would counteract with the Oxy. Abou a week or later my husband went to the pharmacy and picked up Buprenorphine patches. I had not slept for a couple of nights and my legs were misbehaving . i assumed that the doctor did further research and learned that it was ok to prescribe. I put the patch on and a couple of hours later I went into respiratory depression. I could not breath. My feet were insane. I couldn't even sit.

[Joolsg in reply to Josana13]

Your doctor was right. Buprenorphine counteracts other opioids. As I recall, you have serious back issues and are about to have surgery on your spine.

Your medical team will need to monitor your situation carefully because of the RLS and the spine.

I am so sorry to hear you had such an adverse reaction. Did you take the Oxy and the patch? That might explain the respiratory failure - too much opioid in your system.

If your doctor prescribed it to replace the Oxycontin, what dose did he prescribe? The patch for RLS is usually 5mcg or 10mcg. MUCH lower dose than for pain.

Most people with RLS are better suited to sublingual pills taken at night because we need most of the effects in the evening and at night when RLS is at its worse. The average pill dose is 0.5 - 1mg.

I really hope you are better now and that your condition is being closelymonitored. Respiratory depression can happen with opioids, particularly if there are other health issues like diabetes, high blood pressure etc.

You should consider making a separate post about this.

[Josana13 in reply to Joolsg]

Thanks Joolsg,

I was looking at my iron test results. Maybe you can decipher them. How much Iron do I need?

LATEST

Iron 41 ug/dL 37 -145 ug/dL

UIBC 274 ug/dL ug/dL

TIBC 315 ug/dL 250 - 450 ug/dL

Iron Saturation 13 % 20 - 55 %

Ferritin 124 ng/mL 18 - 340 ng/mL5

PAST RESULTS

1/26/2021 38ng/ml

6/16/2021 391ng

6/01/2022 211ng

12/13/2022 124ng

[Joolsg in reply to Josana13]

According to the RLS specialists in the US, your Iron should be above 60 for RLS. Your ferritin is ok at 124. Many people need ferritin above 200 to benefit. Discuss how to raise the iron above 60 with your team.Have a full review with your doctors and neurologists as you need to ensure that the problems with the patch don't occur again.

Did you stop the oxy before starting the patch? What dose patch was prescribed? If above 5mcg or 10mcg, that may have been why you suffered so badly.

[Josana13 in reply to Joolsg]

The dose of the patch was 5mcg and I was taking the oxy. The Doc prescribed the Buprenorphine patches and Fentanyl patches at the same time. I have been fine taking the Oxy. Never asked for more. I saw him the day after I almost died and he said, "If you would gone to sleep you would have died and I would have probably gone to jail." A couple of days later he called me in for an appointment and said he couldn't treat me anymore. I was shocked. I thought for what reason? I think, and tell me if I am wrong, that if he closed my case the Medical Board would not be flagged about all the narcs he gave me.

[Joolsg in reply to Josana13]

I'm shocked beyond shocked. You were on Oxy, fentanyl AND Buprenorphine all at once. That is terrifying.Another reason to research everything thoroughly yourself and double check everything your doctor suggests.

That shouldn't have happened.

Here in the UK, the pharmacist would flag that up.

It's a good thing he decided he could no longer treat you. You need a new doctor.

I don't know how things work in the USA, as this is a UK site, but here in the UK ALL appointments and prescriptions are on a central NHS computer system. It's therefore easy to trace prescriptions and who was responsible for them.

[Josana13 in reply to Joolsg]

Thanks Joolsg, I am looking for a doctor and filing against him to the medical board. I was also told that it was medical malpractice and that I should get a lawyer. One question, if I were to switch to Buprenorphine, how long do I have to be off of Oxy?

[Joolsg in reply to Josana13]

If you're still on fentanyl, you wouldn't be able to take Buprenorphine.I made a straight switch from 25mg of Oxycontin to 0.4mg Buprenorphine pills but I am not on any other opioids.

Hopefully you will find a doctor who will review all your meds and health conditions and history and prescribe accordingly.

Good luck with your operation. I hope it goes well.

[Josana13 in reply to Joolsg]

I never took the Fentanyl. I am on 10mg of Oxy

[Joolsg in reply to Josana13]

Thank goodness. But your doctor should have told you to stop Oxycontin and take Buprenorphine in its place.Thankfully, you made it through.

I hope you are feeling better after such a terrible experience.

[Josana13 in reply to Joolsg]

Thank you Joolsg. We are supposed to trust our doctors and do as they say and look what happens. My primary got upset when I kept telling him I couldn' take medications he wanted to prescribe. He sent me to somebody else to figure me out. Go figure. Thanks again.

[Whymelord]

Hi Twitchy, I hope you get the advice you need on this forum as I'm sure, like us all you are going round in circles trying to get some ease from this horrendous rls.I promise you will get more information here than from GPS. I'm taking pramipexole for years and only really knew the difficulties of trying to get off it.good luck,

[Twitchytheclown in reply to Whymelord]

Thanks, just watched the video and read the pinned post on augmentation, hells bells! On a plus I've more ammunition to take to the doctors

[Shumbah]

Hi Twitchy

I see you live in the UK

I had an email from Professor David Nutt this week and he said that Temgesic which is microdose buprenorphine is available in the UK you will likely need between 1 and 5 sublingual tablets daily start them late afternoon don’t take them all at once . You will know when you have had enough as your legs will be peaceful

Take it slowly alternatively you can as for norspan patch 5 mg

If this works for you as it does for many it is magic , I actually feel like I don’t have RLS thanks to Buprenorphine.

Temgesic 200 mcg upto 5 tablets or Norspan Patches 5 mg

All the best 🙂

[Twitchytheclown in reply to Shumbah]

Thank you, I'll look into this. I'm in Scotland so not 100 % sure they will be available here but I'll assume its the same. Having read your biography so much rang true! I was convinced I had alzeimers as my memory and concentration is so poor. Its tremendous to find your not alone with this condition as it sounds trivial to people but it's far from it

[Shumbah in reply to Twitchytheclown]

Truly hoping you can try it

I feel totally normal now

Please let me know how you go 🙂

[Joolsg in reply to Shumbah]

Thanks Shumbah. I’ve asked my neurologist about Buprenorphine and she replied that it wasn’t likely I’d be prescribed it. I asked King’s College and they said the same.

I will keep pushing and writing but think we need the weight of an RLS UK backed petition to move it forward.

[Shumbah in reply to Joolsg]

Hey Jools

Did you use the word buprenorphine or temgesic ?

Buprenorphine gets a flat out No in Australia too due to the classification, TEMGESIC is not in the same category it seems bizarre I know . However if they ask for Temgesic or Norspan they are all getting a pack of 50 with repeats.

You also have to be refractory.

Try asking for Temgesic or norspan patch

I’ve got my figures crossed for you .

[Joolsg in reply to Shumbah]

I’m severe refractory after DAs and tramadol and gabapentin didn’t work. I’ll definitely bring up Temgesic or Norspan. Seems extraordinary that the same drug in a slightly different format is acceptable. But, as we know, our doctors and neurologists are very outdated/ignorant when it comes to this disease.

Thanks Shumbah. I’ll try again with King’s and my MS neurologist.

J x

[Shumbah in reply to Joolsg]

Good luck

I seriously hope we break the code in the UK 🙂

[Shumbah in reply to Joolsg]

Hi Jools Manerva said the buprenorhone patch is not called Norspan in the UK however they do have buprenorhine patches with different brand names.

[Hidden in reply to Joolsg]

home.38degrees.org.uk/

[Shumbah]

What I am finding even in Australia, is you have to use the word TEMGESIC or Norspan patch. If they ask for Buprenorphine it’s a flat out NO

[Hidden]

I’ve suffered with RSL for years. I was prescribed Ropinrol and was up to the max dose but to no effect. I decided to come off them and suffered awful withdrawal symptoms. I managed to be free of them and one day was driving behind a bus when I saw an advert for a chiropractor. I decided to go for it. The long and the short of it is I’m now fixed! No more restless legs, I sleep all night and can even go to the cinema. It’s cost a few quid but I now only go once a month for a maintenance session. RLS was a result of trapped nerves in my spine. I urge anyone to give it a try. It’s the best feeling ever to wake up refreshed.

[Joolsg in reply to Hidden]

Brilliant news. I’m delighted for you. I spent over 6 months visiting a chiropractor to see if I could get any relief. Sadly didn’t help me but that’s because I don’t have any trapped nerves. I agree it’s worth exploring.

[Jules1953]

Hello Twichytheclown, RLS is certainly no laughing matter. It is cruel and destroys any quality of life. I have had RLS for 49 years.

Please have a look at the postings Shumbah has written.

We live on opposite sides of Australia. But it was her trip to America seeking help from specialists for RLS that lead to her getting help.

Shumbah shared her story and I am now taking the same medication and sleeping through the whole night. I have my life back thanks to Shumbah.

Kind regards Julie

[Twitchytheclown]

I had a email appointment with docs and he suggested blood tests before prescribing anything as I take omeprazole he said its possible it's causing b12 and magnesium deficiency

[ijsgrandma]

Sounds like you are augmenting from the pramipexole. I had the same problem with Ropinirole which is a dopamine drug like yours. It worked fine for two yrs the. I started getting RLS all the time. My dr would just up the dose which made it worse. You need to have a doctor that knows what they are doing wean you off. As soon as I got off my RLS went back to only being at night and occasionally evening. No more daytime RLS!! I couldn’t find any prescription drugs that worked without awful side effects. I take iron to keep ferritin level up and CBD to calm my legs at night. Hard part is getting to sleep since all sleep aids make RLS worse. Low dose THC works okay. Always afraid to take too much.