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Restless Legs Syndrome

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A comparison of the effectiveness of some treatments for RLS

MrCrow profile image
23 Replies

sleeplessinarizona.com/rest...

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MrCrow profile image
MrCrow
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Joolsg profile image
Joolsg

Thanks Mr Crow.Interesting but outdated views on opioids. It says that Targinact should be avoided because of addiction risks.

We should send them Dr Winkelman's Massachusetts Opioid study which was set up specifically to prove that opioids do NOT cause addiction (unless history of abuse) or tolerance ( the need to keep increasing the dose to achieve previous cover).

MrCrow profile image
MrCrow in reply toJoolsg

Its interesting that carbergoline was found to be rhe most effective.

Joolsg profile image
Joolsg in reply toMrCrow

Oh my word! My brain was not working properly.Cabergoline has a STRONG recommendation AGAINST it by the new AASM guidance.

Maybe Arizona doesn't follow the American Academy of Sleep Medicine??.

MrCrow profile image
MrCrow in reply toJoolsg

"

Conclusions:

The main takeaways are that (1) gabapentin and pregabalin should be recommended first, (2) iron supplements can help, but only for those who are low in iron, (3) levodopa probably doesn’t work at all, (4) oxycodone-naloxone could be considered for patients who didn’t see improvement from the recommended drugs, and (5) cabergoline, though shown to be the most effective drug, is not recommended due to risk of side effects (also note the sparsity of trials of the drug).

"

SueJohnson profile image
SueJohnson in reply toMrCrow

It is a dopamine agonist like ropinirole and pramipexole.

Niewiem profile image
Niewiem in reply toJoolsg

opioids do NOT cause addiction with every day use? at first not, than tolerance is coming than increases in order to get same effect than abuse is coming, than Michael Jackson end v. possible, cheers

SueJohnson profile image
SueJohnson in reply toNiewiem

See Dr John Winkleman's study which refutes this for low dose opioids used for RLS.

Joolsg profile image
Joolsg in reply toNiewiem

Correct. Dr Winkelman's study was specifically set up to prove that low dose opioids used for RLS do not cause addiction ( unless there's a history of abuse) or the need to increase the dose ( tolerance). This is completely different to when opioids are used for pain relief.The study is in its seventh year and many members of this forum are original participants.

I started on 0.4mg Buprenorphine nearly years ago. I haven't increased the dose. It still gives me complete cover. Zero RLS since June 2021.

Niewiem profile image
Niewiem in reply toJoolsg

that is so awesome I actually did not realize that rls sufferers need only low doses. Any other meds you take, supplements? cheers.N

Joolsg profile image
Joolsg in reply toNiewiem

I take magnesium citrate at night to counter any opioid constipation and I take 12.5mg ( half the smallest dose pill) of pregabalin. I started this around 4 weeks after I first started Buprenorphine because I developed opioid panic attacks.Dr Buchfuhrer advised me by email to add a small sedating dose of pregabalin. I took 50mg for a month and it stopped all the panic attacks. I then reduced to 12.5mg.

I stay on it because it also helps reduce opioid sweats.

Here is the link to the 5 year results.

acrobat.adobe.com/id/urn:aa...

Niewiem profile image
Niewiem in reply toJoolsg

well done, I'm happy for you. I did gaba and pregabalin, severe side effects especially gabapantin was deleting my routines memory, creating memory holes how to say....but did eleminate rls that was awesome but the pay back too large for the benefits. I'm on anti opioids (LDN) it works 50/50 got good side effects and bad as well. Just curious, how is your morning like, on pregabaline I was not able to move, cheers.N

Joolsg profile image
Joolsg in reply toNiewiem

As I'm only on 12.5mg- I have no side effects.The side effects of gabapentin and pregabalin definitely reduce as your body gets used to them. It takes around 3 months.

Niewiem profile image
Niewiem in reply toJoolsg

hi, so happy for you. question, this Buprenorphine is on red list where I live regardless of 0.4 or 0.001 mg, no body will prescribe, where are you?

Joolsg profile image
Joolsg in reply toNiewiem

South London.There are ways around red listing.

1. See a neurologist within your area who can issue green form prescription. And ask that neurologist and his colleagues to write to the local formulary to add Buprenorphine to the allowed drugs for RLS.

2. See a neurologist out of area who will issue pink form prescription and you pay private cost - but Buprenorphine is a cheap drug.

3. Ask your GP to prescribe Buprenorphine under a 'shared care' agreement with a neurologist.

4. Change GP surgery to one where Buprenorphine is not red listed. NHS allows patients to register wherever they want IF the surgery will take you on. You usually have to sign a form agreeing that they can't do home visits. But GPs stopped home visits decades ago!

5. Move house.

Option 5 is drastic but I will be doing so if my area stops prescribing Buprenorphine.

Lolly53 profile image
Lolly53 in reply toNiewiem

I have been on 7.5 mg of Methadone for six years. Have not needed to increase and my RLS is totally in control as long as I am consistent in my timing. It has given my life back to me! I’m in Texas by the way.

MrCrow profile image
MrCrow in reply toLolly53

did you augment on a DA before being treated with Methadone?

Eryl profile image
Eryl

Only one of them i.e iron supplementation addresses a possible cause of RLS and that only in the relevant people, the rest target suppressing the symptoms of RLS.

MrCrow profile image
MrCrow in reply toEryl

I got my C Reactive Protein tested and it's at 5.6. Does this mean I have inflammation and that its the cause of my RLS?

I also have significantly elevated SGOT and SGPT levels (liver function test). Could these also be contributors.

Eryl profile image
Eryl in reply toMrCrow

Sorry I don't know anything about levels of markers in blood tests but according to this article yours is elevated and could indicate enough inflammation to cause RLS. redcliffelabs.com/myhealth/...

violetta254 profile image
violetta254

I don't know where the studies are that say that iron supplementation is effective only if the iron levels are low. Iron bisgylcinate has been a life saver for me and many others on this site even though my iron levels are NOT low. I can often get through the night with no RLS since I started it. And the information about addiction to opioids when using it for RLS has been debunked.

Joolsg profile image
Joolsg

Are you referring to cabergoline? Certainly most experts do believe dopamine agonists show addictive qualities.

Niewiem profile image
Niewiem in reply toJoolsg

sorry, that was supposed to be a replay to long flights issue, cheers

Lolly53 profile image
Lolly53

Yes. I had suffered with RLS for 30 years or so and had gone through many many meds during those years. The augmentation from Pramipexole and then the subsequent withdrawal process was a literal hell on earth. I found a neurologist in Houston, Dr. William Ondo, who specializes in RLS and also sleep disorders. He is published through Mayo and John Hopkins and is very respected. Between his expertise and the Methadone, my life is 100% improved.

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