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Restless Legs Syndrome

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Dopamine Agonist Official Withdrawal Advice (from Dr Earley??)

Joolsg profile image

Just found this "detox" advice on a RLS Facebook page I was looking through.

It's the first time I've ever seen a formal sheet explaining what will happen during DA withdrawal.

It certainly reflects what I went through. It might be useful for anyone going through it, or thinking of doing so. It would perhaps persuade GPs how horrendous withdrawal from Ropinirole and Pramipexole is for the vast majority.

It talks about a 12 day drug free period so I suspect it's from Dr Christopher Earley at Johns Hopkins University Hospital in Baltimore, USA who favours the drug free washout period to establish the base level of your RLS.

47 Replies

A patient of dr Earley here on HU mentioned that he usually advised a completely drug-free period. Thus stopping the DA promptly without anything to replace it. I have no idea whether dr Earley still favours or advocates this approach. Does someone know?

Joolsg, when was this posted on Facebook?

Joolsg profile image
Joolsg in reply to LotteM

I was looking through my husband's FB page and had a look at RLS worldwide support group. Posted in response to a post about Mirapex 8/9 hours ago.

Joolsg profile image
Joolsg in reply to LotteM

It is Dr. Earley's advice sheet.I found it useful because it clearly sets out how horrendous it will be. If I had been able to show this to my GP after 4 days of zero sleep, she may have believed me and not treated me like a pathetic whinging woman.

Hopefully someone going through DA withdrawal can show it to their GP when begging for opioids to help them through it.

I only have experience in coming off opiates ( fentanyl) . It took me 18 months to get from over 70 to zero. The final 10 days I used valium and Clonidine.I certainly could not envisage going cold turkey. It was quite awful enough going through the very slow taper.

I got absolutely no help from the medical profession, apart from bullying my GP to prescribe the Valium and Clonidine.

The drug free period described above should really be only done in a medically supervised situation.

Thanks for posting.

Jrskyhook32 profile image
Jrskyhook32 in reply to Madlegs1

I agree. My neurologist…or former neurologist I should say from John’s Hopkins’s took me off Neupro cold turkey. It took me 5 days to start thinking about killing myself. I’m not joking. I wouldn’t advise Anyone to try to come off this dangerous drug cold turkey. It was the worst experience of my life. Please be careful.

Joolsg profile image
Joolsg in reply to Jrskyhook32

I agree. It's barbaric. I did it relatively slowly with Tramadol and cannabis and still seriously considered suicide.

Poe7 profile image
Poe7 in reply to Joolsg

Because I see that you mentioned Tramadol I just wanted to say that if you're still taking it and don't know that Tramadol also can cause augmentation. I was on it for over 10 years before I figured out, from another RLS forum, the reason my RLS got so bad was because of the Tramadol. I got up to taking the mass dose per day (400mg). I'm currently complete off the Tramadol and now taking Methadone and my RLS has improved tremendously. I just wanted to make sure you knew, just in case.

Joolsg profile image
Joolsg in reply to Poe7

I only used Tramadol during withdrawal and knew about augmentation. I was put on Oxycontin and it's not brilliant.Getting methadone here in the UK is impossible. Our doctors and neurologists aren't taught about RLS at any stage during training and the few neurologists who know something about RLS are at least a decade behind the top US experts on medications.

I've been in an email argument with the top UK specialist trying to get Buprenorphine. He eventually conceded that he had no objection to Buprenorphine BUT he wouldn't prescribe it. I would have to persuade my GP to do that. It will be very difficult but I'm going to push.

smilingjane profile image
smilingjane in reply to Madlegs1

Mad legs just dipping in here.Do you mind me asking what if anything you take for your RLS now?

I must be miss remembering, I thought from previous threads that you took an opiod for RLS? Or do you take Kraton?

Jane 😊

Madlegs1 profile image
Madlegs1 in reply to smilingjane

You are correct. I had to go back to opiates.I'm on Oxycontin 10 x2 and Oxynorm 5 x1. All good if I don't take any triggers.

smilingjane profile image
smilingjane in reply to Madlegs1

Ah that's what I thought.I'm on 6x5 Oxynorm which works fine. Not keen on 4 hourly med but I found the slow release only lasted 8 or so hours. Thank goodness I have it though. What do you find your triggers are?

😊

Madlegs1 profile image
Madlegs1 in reply to smilingjane

Pretty much all processed foods. MSG, sulphates, colourings and so on.Keeping a food diary is a good way of finding out.

smilingjane profile image
smilingjane in reply to Madlegs1

Ah sulphates as well. Thanks Madlegs 😊

Great, thanks for this.

I wonder what he means by "sedating medications", as in "are likely to make RLS worse or cause a problem with balance".

E.g. valium, clonazepam, gabapentin?

Joolsg profile image
Joolsg in reply to Manerva

I think he means sedating. I remember when going through withdrawal I used diazepam and it gave me a drugged up feeling and I fell over badly at least 3 times. I was at the stage where walking was the only thing that stopped the horrendous all over body RLS but I was too exhausted by lack of sleep and MS so the sedatives made it worse.

Manerva profile image
Manerva in reply to Joolsg

I wasn't sure about gabapentin, it can cause drowsiness and balance problems.

bill54321 profile image
bill54321 in reply to Manerva

Only use at night,

I wonder does he mean so called sleeping tablets such as zopiclone? If so, I would agree that they should be avoided. They make everything worse when RLS symptoms are through the roof.

Yes, I agree, I think he does mean things like, diazepam, zopiclone etc which are classed as sedatives. Gabapentin isn't.

I am on the last leg from 2MG daily over 3 months ago - now on 250 MCG daily, so through , what I thought, was the worst patch but maybe not? Sounds like the final drop will be the worst - any experience out there before I make the leap?

Madlegs1 profile image
Madlegs1 in reply to joepublic

Just take your time and allow your body to accept the new status each step. Keep the increments as low as possible.Good luck.

The final steps are the worst. That is why I took Valium and Clonidine. To prevent suicide ideation.

I got most help from " Blue light " sites ,because these guys( and gals) have the experience of going through withdrawals.

Matt Finch has good advice on how to handle withdrawal. Don't be minding his commercial hard sell stuff-- there is a load of practical help in there.

Good luck.

Joolsg profile image
Joolsg in reply to joepublic

I found that cannabis was the only thing that helped in the 6 days after dropping the last dose.I think the vast majority will experience the hell described by Dr Earley ( I did) but some people manage with minimal suffering.

Make sure you take time off work and have someone to help. My husband stayed up with me as I was very unstable and did honestly consider throwing myself out of the window.

I used tramadol 50mg every 4 hours during the week after the last dose of Ropinirole and smoked cannabis which gave me 30 minutes of desperately needed sleep.

My GP was APPALLING. She thought I was 'hysterical' and actually told me to drink milk for the calcium!!

Luckily my MS neurologist answered my calls and told the GP to give me tramadol as needed and Oxycontin for replacement treatment.

joepublic profile image
joepublic in reply to Joolsg

I have been on Targinact since March so that may help.

Targinact should help. It may be worth trying to build up a stash so that you can slightly increase the dose during the worst days immediately after the last tablet (though obviously taking care to avoid an opioid overdose which is not recommended). I definitely notice that people who take it VERY gradually report slightly less severe symptoms than those who rush it. Also, there is some evidence to suggest that keeping serum ferritin high during the withdrawal helps avoid the very worst symptoms.

Thanks - I do have a stash so that's good. I have already gone from one tab a day to two so will try to avoid any more if possible.

Nanpat profile image
Nanpat in reply to joepublic

Hi, can I please ask what dose your targinact is, twice daily?10 mg at night was working for me but now it does nothing!

Thanks

joepublic profile image
joepublic in reply to Nanpat

5mg/2.5mg modified-release tablet twice dailly

Joolsg profile image
Joolsg in reply to Nanpat

i think many people have reported a similar effect. Certainly my 25mg of oxycontin is no longer working as effectively. i suspect we will have to switch to another opioid which might work in a slightly different way and affect different receptors. just wish we could get low dose methadone, like our US friends.

Joolsg profile image
Joolsg in reply to joepublic

Targinact is Oxycontin with Naloxone to help with constipation.

joepublic profile image
joepublic in reply to Joolsg

Is Oxycontin & Oxycodone the same drug?

LotteM profile image
LotteM in reply to joepublic

Yes. The difference is that Oxycontin is the slow / extended release version.

Joolsg profile image
Joolsg in reply to joepublic

lotte has beaten me to it. Targinact contains the longer acting oxycontin. That's why you take it twice a day, to avoid mini withdrawals.

joepublic profile image
joepublic in reply to Joolsg

OK thanks for that - probably explains when I was taking it just in the morning it was running out of steam overnight.

Any chance of seeing the rest of the article?

There is no article. It's a photo of the advice sheet given out by Johns Hopkins to people getting off DAs.

thank you for posting this! I too would like to see the full article or the Facebook page you obtained this from. I tried to Google it just to realize that it's like searching for John Doe.

cheers!

I found it yesterday while looking through a facebook group called Restless Legs Syndrome ( worldwide support group). The post is below and the poster confirmed it's from Dr. Earley at Johns Hopkins.

Copy page

Can you post the link to this please.

Joolsg profile image
Joolsg in reply to KickingOff

I don't have a link. It's a copy of a photo posted to a Facebook Group yesterday.

KickingOff profile image
KickingOff in reply to Joolsg

Ok. It’s a shame because it looks very interesting. Thanks for letting me know.

Poe7 profile image
Poe7 in reply to KickingOff

Dr. Earley has videos on YouTube about several topics and I believe this is one of them.

I have an orange. RLS defined is an apple. Day time awakened jerks, more Fractured Myoclonic movement disorder(Not exact) but better discription than sleep disorder. So Augmentation is not the issue but really what is it and what to change if the meds are working for an orange?

Manerva profile image
Manerva in reply to bill54321

Hi Bill if the meds you're taking work, then unless you 're experiencing problems with them, there dosen't seem any point in changing them.

bill54321 profile image
bill54321 in reply to Manerva

Thank You

Just for clarification. Based on previous exchanges with Bill, he is comparing RLS with myoclonus and is saying that these two conditions are unrelated, just as apples and oranges are. He has written that RLS is the apple and myoclonus is the orange.

He writes that he has daytime involuntary movements due to myoclonus. This is not a sleep disorder, because it happens during the day. RLS is presumably a sleep disorder, it happens at night.

Bill doesn't think he has daytime symptoms because of augmentation, but because he has myoclonus.

He thinks that his myoclonus is a variant not described before.

He does take RLS meds, but seems to be saying that they work for his myoclonus.

Thank you so much for this, Jools. As others have commented, it provides independent verification (when so often we were dismissed as over-dramatising and sensitive) of the torture that we experienced coming off these vicious drugs.

I did a bit of research to see if I could track down the document. The website of the JohnsHopkinsUniversityHospital, where Dr. Earley works, has some useful information and webinars about RLS but the document was not available publicly.

However, I did uncover something which is somewhat tangentially relevant. The widow of Robin Williams (the actor) suspects that his suicide may have been linked to a change in dopamine agonist medication which occurred shortly before his death when he was prescribed sinemet in place of pramipexole - n.neurology.org/content/lew...

Robin Williams was suffering from a form of dementia (Lewy body dementia) which was misdiagnosed as Parkinsons and in consequence he was unnecessarily being treated with dopamine agonists. It served to increase my anger about these drugs - so often mis-prescribed by the medical profession - may have contributed to the loss of Robin Williams so unnecessarily early.

I didn't know that. I live in hope that these drugs will be monitored far more closely. The doctors prescribing them don't have enough knowledge or information about RLS or DAs to monitor patients safely.

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