Opiate study

[Madlegs1]

This is a link to the first year of a study of rls patients taking opiates for relief. I have obtained permission from the administrators to share this here.

Interesting to see the place of Fentanyl and methadone in usage figures.

Cheers.

partners.us20.list-manage.c...

[Zbirth1]

Thanks once again Madlegs. You Rock!

[Hidden]

Wow, great find,

This is really clear and well presented information.

Just a iittle word of caution, it is only about RLS sufferers who use opioids, it has no information about RLS sufferers who don't. I don't know what proportion of sufferers take opioids as opposed to other medications (or remedies). It certainly doesn't represent RLS sufferers as a whole.

I don't think it should be seen as a recommendation for using opioids, as the document itself says

"This annual study summary is not meant to be used as clinical guidance",

But very useful for anyone who has gone down that path.

It would be really good to see something similar for people using other medications for RLS.

[Madlegs1 in reply to Hidden]

Yes-- it is specifically looking at opioids and rls. Extremely interesting for those of us on that regime.

It certainly would be good to have a wider study of rls treatments-- that would be monumental.

[Hidden in reply to Madlegs1]

I agree, really interesting.

Monumentally, keep looking

[Madlegs1 in reply to Hidden]

A few of us are in this survey. One of the reasons I committed to it for five years, was to ensure that I stay alive for that length of time.

There have been times in the last few years, that has not been an assured outcome.

It is one of the questions they ask in the initial interview. 😱

[Hidden in reply to Madlegs1]

I can appreciate that, I have my own different reasons for doubting my continuing existence.

Thank you for being committed to this study, and to inputting into this community. I'm sure lots of people will benefit from both.

[rls_optimist in reply to Hidden]

Agreed, Manerva, this report is primarily about those on opioid treatment. However, there is one page (13) that does compare RLS sufferers without vs. with opioid treatment in one respect: It reports the incidence of suicidal thoughts before and after starting opioid treatment. So the "before" numbers may be representative of those who don't take opioids. (Although the "before" figures could be skewed somewhat high, since these are likely more serious RLS cases than average.)

It reports percentages with abstract or concrete thoughts of ending life, defined as:

*Abstract: “wishes to be dead or wishes to fall asleep and never wake up” *Concrete: “thoughts of killing myself”

This summary is copied from the bottom of that page:

"37% of participants reported abstract, and 22% concrete, suicidal thoughts prior to starting opioid treatment. These rates dropped to 12% and 5%, respectively, after initiating opioid treatment."

That's roughly a 75% reduction in suicidal thoughts, which is substantial. I found this the most compelling result from the report. And thank you, MadLegs, for providing this link.

[Hidden in reply to rls_optimist]

Hi Yes, I did notice that page.. Not sure how to interpret it. It's clear it means that people who were not taking opioids and became suicidal were found to be less likely to be suicidal after taking opioids. This appears to be a "correlation", there's nothing to show otherwise. It would seem logical to assume that the relief of their symptoms "caused" the relief of their suicidal tendencies.

Conclusion : in itself then, this does not prove that people with RLS who take opioids are generally less likely to be suicidal than people who have no relief for their RLS.

It may be just a particular case of where anything that relieves RLS symptoms will make suicidal tendencies less likely .

Any data which would demonstrate that people who take opioids are generally less likely to be suicidal has to take into account the proportion of ALL RLS sufferers that become suicidal, and the relationship between taking other medications and the likelihood of suicidal tendencies. That is, how many people who are getting relief from RLS without oipites are still suicidal?

Suicidal thoughts can occur for all sorts of reasons, so a further part of the proof of any "opiate effect" would have to also show that this factor was more significant than other factors.

Certainly you could not argue for the use of opiates for RSL based on the data in this paper.

As someone who is struggling with their RLS, but is managing to some degree, but definitely NOT suicidal. this no where near persuades me turn to opiates.

I have recognised the value of the paper, it is a good paper. It is very informative and reassuring for those who have decided to go down that path, that they've done the right thing. I agree, they've done what's best for them. No argument.

I thank Madlegs again for his diligence and commitment.

There does seem to be an element of "cognitive dissonance" in all this. I haven't come across anyone arguing for the use of opiates that isn't using them. I haven't come across anyone arguing against opiates that IS using them Cognitive dissonance suggests that people feel uncomfortable doing something they don't believe in. If you find yourself doing it, you have either believe in iy, or stop doing it.

I am not arguing against the use of opiates for anyone, I didn't want tlo enter into any argument one way or the other.

There are other reasssn for using opiates, suicidal thoughts doesn't seem to be one them as far as I can tell.

[Madlegs1 in reply to Hidden]

All the participants were on Opiates before the interview.

[Parminter]

Brilliant Madlegs, thank you.

I tried to get into this, but without success, so having access to results is wonderful - and rather as I thought they would be.

Every doctor on the planet needs to know these results.

[LotteM]

I take part in the survey as well. Did the interview yesterday and received the 1st year summary of results today. It is a very UNrepresentative study. As only people who were on dopamine agonists before (and augmented? I am mot sure of that part) are eligible. Also, it is US-based and most participants are white/Caucasian and relatively high educated.

I don’t remember the aim of the study. I think it aims at showing that opioids are effective after augmentation and that people who take opioids for RLS need to take only relatively low doses (compared to pain treatment) that remain stable over time.

I missed that part in the summary; the aim (the above may be completely off) and how the results relate to the aim.

[Joolsg]

Thanks for posting Madlegs.

I too take part in the study even though I am not US based.

The reason for the study is to help show that opioids at low dose for many years does not lead to abuse/ addiction. The aim is to prove this to US government which is trying to clamp down on opioids ( understandable given the over prescribing and abuse).

Dr Winkleman says he started the study to show long term results after he had been involved in the original dopamine agonists studies 20 odd years ago. Those studies were based on a 12 week trial and didn’t show the terrible side effects ( Augmentation). He expressed his regret over this

90% of participants augmented on dopamine agonists before switching to opioids and that could explain the difference in suicidal thoughts before and after.

Like you Madlegs, I’m hoping to complete the 5 years!!