RETURN OF PLMD AFTER 9 MONTHS OF BURPRENOROHINE SUBLINGUAL.

[dickJones]

I started taking 0.6 mg of Buprenorphine in sublingual tablets about 9 months ago. My PLMs were instantly eliminated - a result unobtained via other medication. Although I had to offset an insomnia side effect, the Bupe largely restored my sleep architecture and 8 years of wrecked sleep and very distressing muscular flexions were at an end.

But now they’ve returned, mildly but clearly. My GP, under the implied authority of the clinical supervisor of my local sleep clinic, has agreed to a titration up from 0.6 to 0.8, which I started an hour ago after experiencing these tiny but unambiguous left foot flexions.

I’m lying in bed now, waiting in the short term to see whether the 0.2 has registered. And in the longer time to see whether a simple titration will restore good order as before. I’ll report back as and when. In the meantime, fellow PLMD sufferers, wish me luck and watch this space!

[stteb]

It's great you had 9 months of relief. I hope the slight dosage increase will restore that and the PLMS will settle down at that level.

I haven't had much luck with gabapentin for my PLMD, but so far it is only severe for an hour or so each night before calming down and letting me get a few hours of proper sleep despite needing to use a CPAP for my apnea.

Good luck!

[dickJones in reply to stteb]

Thank you,, stteb. My concern now is, of course, maintaining sustained relief at the new dosage level. If any fellow Buprenorphine users have experience of post-titration dosage (hopefully positive!), I’d be grateful for their observations. brain

I abandoned Gabapentin after a second course failed to provide PLMD relief. I would strongly advise that if you’re in a position to avail yourself of Buprenorphine sublinguals, you follow it up. If you’re in the UK that could present a challenge because it’s off licence for RLS/PLMD and many practices elect for legal self-preservation rather than enlightened patient care. But if you locate the MayoClinic and Manhattan General Hospital data (links available here), pointing out that if they’re litigation free in the States they must be fireproof here, you may swing the judgement. If this recommendation is appropriate for you, all the very best!

[Madlegs1 in reply to dickJones]

I don't know if paracetamol has the same effect on bup as on other opioids, but I'm on hydrocodone, and if I'm getting triggered, I take 250mg of paracetamol, which potentiates the opioid enough to get me over the hump..

As I say, I don't know if this works for Bup as it is a slightly different opioid. But may be worth a try or research.

Try Cochrane review?

All the best.

[Madlegs1 in reply to Madlegs1]

I'm in for a break from splitting Yule logs, and check ed out the above.

Can't find any research to support my particular suggestion, but plenty of research that says Bup increases strength of paracetamol!!!

Go figure that one!!

Anyway, the bottom line is that they can be taken together and do have a synergistic effect.

So I would be happy to try out my suggestion above without fear.

Good luck.

[Joolsg]

That's annoying. I wish you luck and really hope the extra 0.2mg settles the PLMD. The Massachussetts Opioid Study confirms an upwards adjustment is common in the first year. The average effective dose of Buprenorphine (Mayo) is 1- 1.5mg so you still have room for manoeuvre. We all want to stay at the minimum effective dose for as long as possible.Perhaps christmas treats triggered a temporary worsening or your iron levels dropped?

[dickJones in reply to Joolsg]

Cheers, Jools, yes, I was happy with how things were going! Pleased though that the doc was only nominally resistant. No early Christmas treats - domestic economy has seen to that! As for iron levels, a full BT is due so we’ll see.

[Tanker1]

Its great you found a solution. I've been reluctant to try any sort of opiods for my PLM because I already have insomnia and don't want to make it worse. If I may ask, what did you do for your insomnia?

[dickJones in reply to Tanker1]

I alternate Zolpidem (can’t remember the value, but I cut them in half) and Zopiclone at 3.5 mg, with a course of Melatonin capsules, two a night, in between. This has obviated dependency, but I’m quite resistant to it anyway! The menu works well for me.

[Tanker1 in reply to dickJones]

Thanks for the response. I've got a small amount of Zolpidem. I cut a 5 mg tab in half which does help with my early rise insomnia. The sleep doc doesn't want me taking it more than 2-3 times per week as it can be addictive. THC in the form of indica edibles enhanced with CBN works by far the best but I'm trying to wean off of it. Melotonin generally makes PLM worse.

[dickJones in reply to Tanker1]

I only have PLMD, which seems to tolerate Melatonin so I’ve been able to use it as a buffer between the half-doses of Zolp and Zop.

[RLSofManyYears]

I too found that my RLS stopped dead for 9 months but with just 0.2gm (1 Temgesic tablet, in the UK). So I upped it to 2 tablets, then to 3 and finally 4. However, as I was latterly on 400mg Pregabalin as well, my doctor said that, due to my age (early 70s) I really needed to reduce the Temgesic. So I'm titrating the other way, from 4 tablets to 3 tables over 7 months.

Nothing really seems to work in the long term.

[Hidden]

Not necessarily. The studies on melatonin and PLMD are ambiguous.

[Lettucenotforget]

Showing my ignorance here but what does PLMD stand for. Good luck with the upgraded meds x

[Hidden in reply to Lettucenotforget]

Periodic limb movement disorder- a separate but related condition to RLS.

[SueJohnson in reply to Lettucenotforget]

And PLMD is treated the same way as RLS. It usually occurs while sleeping and is diagnosed with a sleep study.

[Hidden]

There are several studies, with differing outcomes. Put "Periodic Limb Movement" and "melatonin" into Google Scholar and you'll find them.