I attach the latest Massachusetts Opioid Register results, showing the medications taken by participants and the doses.
Dr Winkelman set up the Register to show that addiction and tolerance are unlikely to happen when low dose opioids are used for RLS.
For those who have augmented on dopamine agonists and who have not responded to iron infusions or gabapentinoids, this study can help to persuade your doctor that opioids can be used safely to treat Refractory RLS.
Interestingly 6.6% of the original 500 participants have switched to Buprenorphine.
I am so excited by this…. Year 4 now… guess we’ll obviously await the full 10 years but the powers that be surely must pay attention to how this is developing 👍
Yes.. results always follow on a bit behind… perhaps a bit frustrating that it’s so behind…. And maybe when we’re closer to the 10 year mark, they might work extra hard and quickly to keep the delay to a minimum….
Less promising than one might hope. 50% have increased dose (wasn't DA around 60%?). Those with mild or moderate symptoms have increased by approximately 10%, Whilst those with severe/very severe have only dropped by 2%. So a net increase in suffering by 8% despite 50% increasing dose. That people who were taking opiods still are is no surprise (no where else to go once you have tried everything). On the positive 19% have decreased dosage and some % have co existing pain conditions (traditionally non RLS pain conditions are a risk factor for increasing dosage, largely contributing to opiod prescribing fear).
Dr Winkelman has said that most patients who increased the dose did so in the first year to achieve the correct cover. Also, those who have increased since have done so for 'pain'.I'm a study participant and started off reporting Oxycontin 25mg. My symptoms were still very severe until year 4 of the study when I switched to Buprenorphine.
My RLS symptoms have completely disappeared. I suspect that, if the study separated out the methadone and Buprenorphine patients, the results would be different, showing a great reduction in RLS severity.
He should make that clear in the report. Because it is misleading just looking at the report. Also looking at the report as ChickenTwisty pointed out you would think that the opioids didn't help people.
I think though that the study's aims are to show that addiction/tolerance rarely develop. The doses remain low and the study does point out that higher doses are linked to patients who also experience pain.
I am a opiod and Buprenorphine in particular supporter, but this as presented doesn't seem to evidence that. Again if DA are 60% increased dosage after decades and opiods 50% increased dosage after 4 years, then this isnt reading well. Potentially (likely even) those on DA also have the 1st year stabilising, coborbid pain, depression etc risks. Again opiods worked for me and I want this to read better. I deduce that 50% of 60% is another positive indicator and that could be highlighted rather than being deduced (19% reducing dosage being the other positive indicator that is mentioned).
"I deduce that 50% [who increased dosage] of 60% [DA takers who had already augmented and hence became eligible for opiods] is another positive indicator and that could be highlighted rather than being deduced" ... maybe I erred i.e. if the other 50% had already augmented to severe or very severe prior to opiods (noting that 50% of reports are in those categories). Then what is to be made of that? e.g. not enough data here but of course if 25% could get no (I.e. already very severe) worse and they weren't the 50% that increased the dosage then .... not good!
The median dose has remained the same since the study began. And the doses weren't necessarily increased by a large percentage. 50% say they have increased the dose from baseline (Y1) but most made the increase in the first year.The tables do not make it clear that patients are not increasing the dose every year.
I'm sure that Dr Winkelman will give a webcast and will clarify the results. ( I hope he does).
"The median dose has remained the same since the study began" I note this is from the info graphic but can't have it both ways, I.e. the 1 year stabilising argument used to justify the 50% increasing dose must apply to the 19% who decreased (together with the 31% stayed on same dose = median).
I 2nd "I hope he clarifies", based on your and my experience and many on this forum it seems positive. But we are a small data set.
I believe I have augmented on opiods (that said I augmented significantly in weeks on DA but only minor in 2 years on opiods) and there are others in the last two years who have posted here who have said they augmented on opiods and been told they haven't.
What is really needed is a study on opiods as first line treatment, not going to get that in the current environment, but the data as presented is open to the criticisms I have made and that those on opiods are predominantly there because they have already augmented. There is nothing to say they would not have augmented had they had opiods as first line, or that the dose has not increased (for the 50% that hasn't) because they have already augmented as much as they can.
None of this is to say that opiods shouldn't be a fourth line treatment, I likely wouldn't be here otherwise, but it is to say that our experience is young and there are unanswered questions. It would be a terrible outcome if ultimately we did augment on opiods and that was used as an argument to deny as a fourth line treatment.
Just to clarify the data on those increasing their opiod dose are not from year 1 of taking opiods but year 1 of the study.
75% of participants had being taking opiods for more than 1 year at commencement of the study.
Around 30% had increased their dose by the 1 year study followup by an average of 10MME. Of those who increased by >= 25MME they had the risk factors outlined in the four year follow-up.
By year 4 50% had increased dose. So another 20% had increased their dose and potentially some of the original 30% had increased their dose. Despite this we have the reported net increase in RLS suffering captured in the year 4 report.
My take is, definitely get off of DA if you are augmenting (there isno doubt this is the worst risk) but stick with other medications as long as you can because the book on augmentation on opiods is not yet closed and this is currently the last line treatment, keep it in your back pocket until you need it because where are you going next!
"At baseline, three-quarters of registry participants had been taking a prescribed opioid for RLS for more than 1 year and one-third for more than 5 years, and had mild-moderate RLS symptoms. At 1-year follow-up, 31.2% increased dose (median = 10 MME) and 16.0% decreased dose of their opioid. An MME increase ≥25 was associated with: opioid use for non-RLS pain, <1 year of opioid use, opioid switch to methadone, and discontinuation of non-opioid RLS medications which, combined, accounted for 91.7% of those with 1-year follow-up increases ≥25 MME." Baseline and 1-year longitudinal data from the National Restless Legs Syndrome Opioid Registry
That certainly does clarify some of the issues.Augmentation doesn't happen on opioids. Only DAs. Tolerance might happen and seems to be associated with pain. That confirms other studies that show opioids lose effectiveness when used for pain relief.
So far, I haven't increased my small dose of Buprenorphine after 3 years. But, I don't have any pain.
Because Dr Winkelman actually makes that statement. Probably because Buprenorphine has only been used in the last 5 or 6 years for RLS and is being prescribed by more doctors in the USA and here in Europe.Buprenorphine is a synthetic long half life opioid. The long half life makes it particularly suitable for RLS as it doesn't cause mini opioid withdrawals, like the short half life opioids.
Many on this forum are now taking Buprenorphine after Shumbah had miraculous results 5 years ago.
I switched from 25mg Oxycontin to 0.4mg Buprenorphine and it was instantaneous relief. I am totally RLS free. Night or day.
This is great. After argumentation so bad im now about to drop to .25 Ropinirole taking 30mg at 10pm and 2am and barely getting any RLS and got a large part of my life back, my mental health is better and i am hopeful for the future or this phase.
Thank you for this -- it is very difficult to get an opioid prescribed for any reason because of the epidemic of addicts. I'm hoping this study will allow my doctor to feel ok in prescribing it for me -- he has known me personally for 30 years but there is still the hassle of extreme oversight by those who are trying so hard to help those who are addicted. I was so happy to see I can get methadone at Costco for a reasonable price.
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