Buprenorphine finished. What alternat... - Restless Legs Syn...

Restless Legs Syndrome

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Buprenorphine finished. What alternative opiates are available?

dickJones profile image
66 Replies

After four weeks of insomnia and continued PLMs on 15 mgc patches, I shall abandon the treatment. I’d be grateful for advice on a.) potential withdrawal issues, and b.) alternative opiates.

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66 Replies
Madlegs1 profile image
Madlegs1

Opioids would be Methadone or Oxycodone (oxycontin or oxynorm)I have been on the latter two for 9 years without major issues.( 25mg per day.)

dickJones profile image
dickJones in reply to Madlegs1

Thanks, Madlegs. Even if, as Amrob reasonably suggests, I’ll find the same side effects across the available opiates, I’ll have to try to persuade my GP practice to prescribe accordingly.

Amrob profile image
Amrob

You may also experience insomnia on other opioids unfortunately.

dickJones profile image
dickJones in reply to Amrob

I feared as much. If such is the case, I’m at the end of my list of meds.

Amrob profile image
Amrob in reply to dickJones

That's no good at all Dick. I tend to get insomnia on opioids with Tramadol being the absolute worst. Oxycodone and codeine were slightly better and buprenorphine i was awake with nausea so couldn't ascertain whether i had insomnia also! Hopefully you do manage to find the right one for you.

dickJones profile image
dickJones in reply to Amrob

Thanks, Amrob. I’m desperate enough to try all the options I can persuade my largely uninformed GPs to prescribe.

LanaCSR profile image
LanaCSR in reply to Amrob

I just wanted to put in my two cents for whatever it's worth. I take buprenorphine and it tends to upset my stomach, too, but my doctor prescribes me Zofran and that helps. If you can't get Zofran, Pepto Bismol (OTC) also works really well, and neither affect my RLS. Good luck!!

Joolsg profile image
Joolsg

What did your GP say about sublingual Buprenorphine Dick?I still think it's worth a try as it is most effective for the first 8 hours after you take it. Taking it an hour before bed would cover the PLM during the night. The patch gives a steady amount 24/7 so you don't get the 'hit' at night when you need it most.

If you also ask for zolpidem sleeping pills to take for 2 nights a week, that might work. You can't take them every night as they lose effectiveness. Or a small dose of pregabalin or trazodone at night might counteract the opioid insomnia. Your GP seems helpful so hopefully will listen to your suggestions.

You can switch straight over to Buprenorphine pills from the patch.

I don't think you should give up yet. Definitely try the sublingual Buprenorphine.

The other commonly prescribed opioids are tramadol and Oxycontin. Tramadol can cause augmentation so maybe best avoided if you experienced augmentation on Dopamine Agonists. Oxycodone or Oxycontin might work as they affect slightly different opioid receptors than Buprenorphine. Some take Oxycodone just at night but Oxycontin is usually taken twice a day. Average dose is 20 -30 mg.

I hope you manage to get a GP appointment and discuss your options fully.

dickJones profile image
dickJones in reply to Joolsg

Helpful as ever, Joolsg, thank you. At the very least, I can’t do worse than on the patches!

Joolsg profile image
Joolsg in reply to dickJones

One other suggestion for insomnia. Medical cannabis.My clinic has stopped taking new patients but if you search for medical cannabis clinics UK, several should come up.

Sadly it's not available on the NHS and it costs about £2.50 a day. I used a cannabis oil called Althea Champlain with 20% THC. It used to knock me out for 4 hours.

I haven't needed to take it while on Buprenorphine as I now sleep well.

dickJones profile image
dickJones in reply to Joolsg

I have a consultation due with a doctor on a medical cannabis programme called Lyphe. No way I could afford it on the £60.00 a month they charge. But the data generated in my 30 mts-worth could be useful.

Shumbah profile image
Shumbah in reply to dickJones

My recommendation would be the same as Jools

I had this conversation with Professor Winkelman about other patients suffering from Buprenorphine induced insomnia.

His recommendation was to take 2 mg Buprenorphine earlier in the day , to add sleeping pills at night alongside CBD AND THC

I am lucky I don’t suffer insomnia from Buprenorphine .

dickJones profile image
dickJones in reply to Shumbah

Makes sense. I’ll double the dosage of the remaining tablets and renegotiate dosage first thing on Monday plus sleeping pills.

Shir_11 profile image
Shir_11 in reply to Joolsg

I am on the Temgesic sublingual and I have no trouble sleeping. Better than the Norspan patches.

dickJones profile image
dickJones in reply to Shir_11

Thanks. Encouraging.

Nanpat profile image
Nanpat in reply to Shir_11

Hi, can I ask why you think the tabs are better than the patches?

I started on the patch with no episodes of rls for 3 months but now my body seems used to it and I’m having milder rls every night!

I’m not sure what to do now as was told I would be better off with 24 hr coverage even though I only suffer at night?

dickJones profile image
dickJones in reply to Nanpat

I haven’t made the switch yet, but would refer you to Joolsg’s response to my Buprenorphine post above for why I’ve decided to make it.

Shir_11 profile image
Shir_11 in reply to Nanpat

I do alternate the Norspan 5m patch with the Temgesic. I do like the patch as I don’t have to worry about taking the tablet but with the patch on I find I have to take a quarter of Temgesic some nights as the Restlessness is there when I go to bed. Always good during the day.

Amrob profile image
Amrob

I just looked up what Involuntary Dancer takes as I believe she too gets insomnia from opioids. Here's one of her replies which details her (current?) regime.healthunlocked.com/rlsuk/po...

noemata profile image
noemata

unlike other opioids, buprenorphine is, among other things, a kappa/delta-opiod-receptor-antagonist. this is positive, but leads to increased vigilance. as others have already mentioned, z-drugs could help. due to rapid tolerance, however, not very helpful. pregabalin 150mg 1h before going to sleep in combination with buprenorphine (sublingual, & not right before going to bed, but late afternoon) helped me.

however, it is important to ensure that respiratory depression does not occur with this combination.

a dual orexin receptor antagonist (daridorexant) would also be an option when it comes to the opioid-induced sleep disorder.

since - in my case - buprenorphine in a dose of 0.4-1.3mg did absolutely nothing against the rls/wed- symptoms during the day + in arms, oxycodone is being tested as of today.

dickJones profile image
dickJones in reply to noemata

Thank you, noemata!

Birdland profile image
Birdland

I haven’t tried buprenorphine but have tried oxycodone, tramadol, codeine, morphine and methadone. Methadone is the only one that didn’t give me insomnia.

BeachGolfer profile image
BeachGolfer

I have added a 25mg Delta 8 Indica THC Gummy to my nighttime Oxycodone and CBD “cocktail” and now only wake up briefly once or twice but fall right back to sleep for a total of about 7 hours. I also have had to cutout alcohol 😩sugar 😩and carbs😩 starting late afternoon.

dickJones profile image
dickJones in reply to BeachGolfer

Thanks, BeachGolfer, sounds like a recipe for tranquility!

dickJones profile image
dickJones

Here’s the latest on my Buprenorphine struggles. A sympathetic GP immediately switched me from patches to sublingual. Last night was the first of the course of 7 200 mg tablets that I’m to try.

Another very bad night with 40/45 minute sleeps interrupted by PLM attacks. Just one REM sleep. So whilst the protracted periods of insomnia were briefer in duration, the PLMs went untouched and they interrupted what might otherwise have been more sustained episodes of sleep.

In the event of the sublingual Buprenorphine not working out (and last night was hardly encouraging), my GP is prepared to discuss Oxycodone and although I didn’t mention Methadone, I think she’ll at least give me a hearing.

However, I’m taking seriously the warnings that all opiates are subject to insomnia as a side effect (although with respect to the Buprenorphine patches, I’m puzzled why I should have been hit so comprehensively by side effects 6 months after starting the patches). Clearly I’m not going to persuade the NHS that I should be the first RLS/PLMD recipient of medical cannabis. And there’s no question of my being able to afford going private.

So where does this leave me? Might Pregabalin work a second time around? It did me well prior to my becoming resistant nearly two years ago? I shan’t touch dopamine agonists again. The view from here is bleak.

Amrob profile image
Amrob in reply to dickJones

How about finding the most tolerable and effective opioid for you, and then safely adding in another medication to assist with sleep? I have seen a few suggestions for such sleep aids on this forum .

dickJones profile image
dickJones in reply to Amrob

Thank you, Amrob, that would make good sense. At least I’ve located a GP who’s ready to negotiate. I’ll see how the weekend goes and then hope to manage a cocktail that might suppress the PLMs whilst providing some sleep.

Joolsg profile image
Joolsg in reply to dickJones

I presume you mean 0.2mg or 200mcg? If so, that's too low and is lower than the 15mcg patches so will cause opioid withdrawal RLS/PLMD. 15mcg patch releases 15mcg an hour so 24x15 = 0.36mg over 24 hours. You are taking just 0.2mg so nearly half the dose you were on.The average sublingual dose is 0.5 -1mg.

I think it won't work unless you try 0.4 or 0.6mg so 2 or 3 of the pills at night.

So don't give up just yet and discuss with your GP.

I tried 0.2mg and was awake most of the night with RLS. Adding another 0.2mg 2 hrs later stopped all RLS.

Don't give up yet!

dickJones profile image
dickJones in reply to Joolsg

Thanks, Jools, put it down to brain fog! I have 5 pills left at 200mcg/2mg so double up tonight and tomorrow night (Saturday/Sunday) and get the prescription reallocated at twice the value first thing on Monday.

Joolsg profile image
Joolsg in reply to dickJones

I take mine 2 hours apart. 200mcg at 10 and 200mcg at 12. I find that gives better cover than 400mcg all at once. It's trial and error.

I only need 400mcg pills but others need 600/800mcg.

Shumbah takes between 1 and 2mg (1000-2000mcg).

In RLS, one size does not fit all.

I really hope it helps.

If not, you could discuss a small increase to 800mcg. The average dose is 0.5-1mg but the maximum for RLS is quite high - 6mg. That's 15 times higher than my our current dose!

Most people manage on much lower doses, but you still have wriggle room and going up to 800mcg may completely control the PLM at night.

Fingers crossed.

Prof. Chaudhuri would like to do a controlled trial of Buprenorphine in the UK so it can be licensed and GPs can prescribe it. However, £100,000 is needed for the trial so doubt it will happen. I've written to several pharmaceutical companies to see if they'll fund trials but Buprenorphine is a very cheap drug so there's no profit in it.

We need a wealthy celebrity with RLS to fund the trials.

dickJones profile image
dickJones in reply to Joolsg

Sound advice, provided I make it through to midnight! I’ll go with the suggested initial doses, although my record across the various meds tends to have me settling for higher values.

Given the relative prevalence of RLS, a search for that generous celebrity might actually make some sense!

dickJones profile image
dickJones in reply to Joolsg

Hi Joolsg. Confusion! Urgent information and advice sought. At my request and with my GP’s compliance I’ve just finished a 7 days course of sublingual Buprenorphine tablets, 2 a night at 2mg each so 4mg in total. They worked pretty well, eliminating the PLMs completely and giving me about 6 - 7 hours sleep, predominantly REM sequences. After the required ratification from my sleep clinic doctor, this morning my GP prescribed a further 28 tablets at the same 2mg strength to last for the next 14 days.

However, late this afternoon I received a phone call from the practice pharmacist notifying me that she has emailed the GP to point out that at 2 x 2mg a night the tablets are significantly above the recommended maximum dosage and to urge a patient/doctor review of the situation.

Here’s my 3-way confusion. The recently published MayoClinic recommendations set the maximum daily sublingual Buprenorphine dosage at 0.5/6. In a previous response in this thread you gave 6mg as the top RLS level. And from some source of data my GP has set 4mg as an acceptable dosage. What do I do? a.) Continue as prescribed last week and this and potentially risk dependency? Or b.) reduce to one 2mg tablet and potentially risk the return of the PLMs and withdrawal effects?

A little context for the above, I stated that my GP required ratification from my sleep clinic doctor before issuing the second prescription. The latter was swift in providing the thumbs-up but stated in his letter that he’d never encountered sublingual Buprenorphine tablets before, having only ever dealt with patches. So I have a GP who confesses ignorance about medication for RLS/PLMD having her medication ratified by a sleep clinic specialist who’s never encountered Buprenorphine administered sublingually!

All help, guidance and advice anxiously awaited!

Joolsg profile image
Joolsg in reply to dickJones

You started on 0.2mg (200mcg) and that didn't work, unsurprisingly as it's the lowest possible dose.I recommended asking for 0.4mg or 2 x200mcg.

Instead, your GP has prescribed 4mg which is 10 times my dose and that's why the pharmacist has raised an alarm.

I have no idea why he would increase from 0.2mg to 4mg. That's 20 times what you were on. The sleep specialist who approved such a rapid increase should also be made aware that it is a huge increase.

Although 6mg is the MAX dose set out in the Mayo algorithm, the average dose is 0.5mg.

Always aim for the average dose and adjust upwards in small doses of 0.1 or 0.2mg every few days ONLY if needed.

The average dose is 0.5mg, so 4 times lower than your current dose.

We are all dependent on our meds for RLS so we are on them for life so don't worry about that. Withdrawal symptoms happen when we stop opioids but that isn't the case if you stay on them.

However, in your case 4mg has worked.

I suggest you drop back to 2mg a night straight away and hope you don't get withdrawal symptoms.

Then stay on that if it covers the RLS and PLM.

Shumbah started on 2mg and reduces downwards occasionally.

Accord brand work best for me, followed by Sandoz.

Hope this helps....

dickJones profile image
dickJones in reply to Joolsg

Thanks, Joolz. For tonight all I have is blister packs of 2mg tablets. In order to enable some sleep tonight without ether overloading massively or risking cold turkey, should I cut a 2mg tablet in half and take each half either side of a 2-hour interval?

Joolsg profile image
Joolsg in reply to dickJones

Yes that's what I would do.

dickJones profile image
dickJones in reply to Joolsg

It’s a mighty drop from 4mg to 2m in one go. Isn’t the probability that the PLMs will return in force and I’ll also experience withdrawal symptoms?

Joolsg profile image
Joolsg in reply to dickJones

Not necessarily as you were on it for 7 days. If it does play up, you can either stick it out to see if it settles within 2 or 3 days OR if intolerable, stay on 4mg and argue your case with the sleep specialist and GP.It's their fault they messed up!

They should have slowly increased the dose from 0.2mg up to 1mg.

You probably would have discovered that 0.6 or 0.8mg worked very well.

dickJones profile image
dickJones in reply to Joolsg

How about just 2mg straight, no 2 hour separation?

Joolsg profile image
Joolsg in reply to dickJones

You could try it. Hopefully, 2mg will cover you for 6 or 7 hours.

dickJones profile image
dickJones in reply to Joolsg

Here's how it all worked out on 2 mg plus another question (sorry, Joolzg!)

Before going to bed I cut a 2 mg tablet in half. I took the first portion at 21.00 and then the second at 23.00. Expecting little sleep and the return of the PLMs, I was surprised to wake up 1 hour 5 mts. later. I then slept for a further 30 mts, waking to go to the loo. There then followed sleeps of 1 hour 35, 2 hours 55 and 1 hour 10 with only brief awakenings between each. And there were no PLMs. So a pretty decent night for me all in all.

There are two possible rational explanations: I. It was an aberrant night such as occasionally and counterintuitively interrupts a sequence of insomnia and PLMs, or 2. Had I been started on, say, a 0.5 mg tablet, I'd have been fine and 2 mg was way over a workable dosage. Tonight's sleep on the same dosage as last night's will clarify which is the more likely.

There's a tad more. I had a call from the surgery this morning asking that I arrange a consultation with my allocated GP (usually we choose not to use him) to discuss the Buprenorphine dosage going forward. I'm assuming that he'll require a scrapping of the current tablets and a re-start on a lower dosage. I'd like to be in a strong position to insist on staying on 2 mg divided as per last night. Joolz, you said that the maximum RLS/PLMD dosage was 8 mg. I can't find this stated anywhere so could you point me in the right direction? I've already arranged with the practice that I'll send them the Mayo Recommendations for future reference so if it that max is in there I'll be able to point it out. Thanks in anticipation!

Joolsg profile image
Joolsg in reply to dickJones

mayoclinicproceedings.org/a... is the link to the Mayo algorithm opioid table. It shows the effective dose is between 0.5mg and 6mg.

I've never come across anyone taking more than 2mg so I would always err on the side of taking the lowest possible dose to control RLS/PLM.

If 2mg covers your nights, you can argue to stay on it and show table 4 of the Mayo guidelines to help.

But remember, RLS isn't even taught in the UK so all meds apart from the dopamine agonists are prescribed 'off licence'.

Joolsg profile image
Joolsg in reply to dickJones

You're correct about max dose though. I always thought it was 6mg because the Mayo algorithm only mentions an effective dose of 0.5.g to 6mg.The fact they don't mention a higher dose led me to believe 6mg was the maximum.

I suppose there may be some who metabolise opioids quickly and don't respond to doses below 6mg. I've not encountered many.

Arguing for doses above 6mg in the UK may be difficult as there are no studies at all here and it's not licensed for RLS.

Even the few experts, like Prof. Chaudhuri, are reluctant to prescribe opioids off licence.

dickJones profile image
dickJones in reply to Joolsg

joolsg, how did you manage to get your Buprenorphine dosage set to 0.5? My doc won’t shift up from 0.2, which stopped working after about a week.

Joolsg profile image
Joolsg in reply to dickJones

My GP originally prescribed 0.8mg after I told her Shumbah was on 2mg. My GP suggested a lower dose of 0.8mg but I only took that for One night as the nausea next day was so overpowering.I dropped down to 0.2mg but that didn't cover the RLS so I added another 0.2mg 2 hours later. I'vebeen on that ever since.

I have no idea why your doctor refuses to prescribe 0.4mg or even 0.6/0.8 mg.

The Mayo algorithm shows the effective dose is between 0.5 to 6mg.

I suggest you beg and explain that anything under 1mg is an incredibly low dose. Maybe if you suggest a 3 week trial and explain that most people on opioids have one upwards adjustment in the first year.

If your GP still refuses, you may have to pay privately to speak to Prof. Walker by phone and he can recommend a higher dose.

It's so frustrating that GPs are denying effective treatment.

dickJones profile image
dickJones in reply to Joolsg

Thanks, Joolzg. My GP listened carefully to my representations, including my account of the Mayo Clinic proceedings and my argument that in the absence of UK protocols general practice must have recourse to whatever substantive treatment data is available elsewhere and then take a view within the dosage spectrum provided. To force a patient to stay with a dosage that’s self-evidently inadequate is both obtuse and cruel.

I’ve had one consultation with this GP, since which last week I experienced 4 nights in a row wrecked by the return of my PLMs, long bouts of insomnia and spasmodic short scale non-REM sleep. The night before last I unilaterally doubled my Buprenorphine sublingual dosage to 0.4, lost the PLMs, experienced long term insomnia but caught the extended Circadian sequences and managed some late REM sleep. Last night was pretty much fine.

So the battle will go on. I’ll ask him to re-prescribe at 0.4 and review weekly, setting a top dosage towards which to titrate as tolerance develops. Since the practice screwed up big time in the first place, I feel that my reasoning/bargaining position is sound. It would help if I could make reference to others’ experience. Did you have a struggle with your GP, Joolz, or did they simply accept the Mayo recommendations in the absence of NICE directives? And how long have you been on 0.5 mg?

Joolsg profile image
Joolsg in reply to dickJones

I was under Prof. Chaudhuri. I asked him for Buprenorphine and had several 'terse' emails. He effectively said the ONLY opioid that he could recommend was hydrocodone because he did the trials for RLS.

I kept emailing and pointed out that many on the forum with refractory RLS tried Buprenorphine and it had miraculous results.

He then emailed back to say he 'had no objections to Buprenorphine if your GP agrees to prescribe it'.

Neurologists know that GPs do NOT like prescribing opioids that are not licensed for a disease. Effectively, he was saying 'let the GP bear any risk of losing their licence' if anything went wrong.

I sent Prof. Chaudhuri's email to my GP with copies of the Mayo algorithm and the Massachussetts Opioid Study. I expected a long fight.

Luckily, my young, female GP agreed to a 3 week trial. She called me every week.

As the result was instant and miraculous, she put the Buprenorphine on repeat prescription. She is now aware of the dangers of dopamine agonists and that low dose Buprenorphine turned my RLS from 36/40 to 0/40 on the IRLSS.

It very much depends on your GP.

However, the medical and scientific evidence is there in the Mayo algorithm and the Massachussetts Opioid study.

It's infuriating that the UK will not accept them.

Prof. Chaudhuri said trials of Buprenorphine have to be carried out before it can be licensed for RLS in the UK. He offered to do the trials at King's hospital if I could find the £100,000.

I've tried National Lottery, MS Society, Accord, Sandoz and Morningside pharmaceuticals and several funding bodies. All have refused.

Buprenorphine is a cheap drug so there's no money to be made.

I really hope your GP reconsiders.

Anything up to 1mg is extremely low dose. You are not an addict.

Every RLS drug will cause dependence because the disease is incurable. Opioids do not cause addiction ( unless there's a history of abuse) and the Massachussetts opioid study shows that opioids do not lead to tolerance for RLS.

Most of the 500 participants are on the same low dose for years.

You could ask your GP for a 2 month trial. He can call you every 2 weeks to ensure you are not taking more than 0.4mg and to question you for side effects and the results on your RLS & PLM.

I have been on 0.4mg since July 2021.

dickJones profile image
dickJones in reply to Joolsg

Last night on 0.4 was pretty grim. A single PLM only, but a series of short scale sleeps punctuated by bouts of insomnia and only one REM sleep in amongst the late sleeps just after dawn. And throughout the night there was a burning sensation radiating from both knees. So I'm probably way below my required dosage.

But I have to try to move things on in spite the doctor's intention to review me at the end of a month's-worth of 0.2 tablets. So in order to solicit a second opinion, I'll try to see the doctor who mis-prescribed in the first place because if she has any sense of the potential effects of such errors, she'll maybe be glad of a chance to redress the mistake. I'll tell her that after 3 consecutive nights of short scale sleep, insomnia and returned PLMs, I started doubling the second doctor's 0.2 mg tablets. As you suggest, I'll ask her to issue me with enough to continue at 0.4 with a review at the end of a week. But I shall emphasise that there's every chance that 0.4 is still way too low a dose and that I may find the need to titrate further. Worst case scenario, she'll back up the second doctor and refuse treatment amendment, in which case checkmate.

The only positive in this ongoing disaster has been the support of the practice pharmacist who's due to check in with me in a couple of days. But he's not going to get into a shootout with his doctor colleagues so it'll hinge on whether I can swing it with that first doctor. Damn. It was such a good surgery pre-pandemic.

What's the Massachusetts opioid study? Even if this lot would rather hang onto the security of UK ignorance/indifference than make use of substantive hardcore data generated outside our shores, I have to continue to flap it in their faces!

Joolsg profile image
Joolsg in reply to dickJones

massgeneral.org/rls-registry

The Massachussetts Opioid Study for RLS is run by Dr. Winkelman, one of the world's top experts and a co writer of the Mayo algorithm.

The study was set up over 5 years ago with funding from rls.org to prove low dose opioids are safe, highly effective and do not lead to addiction or tolerance.

The 500 participants are mainly over 60 and all have stayed in the study. It is intended to show that RLS is different from standard pain where opioids DO stop working & the dose has to be increased .

Madlegs and I are 2 of the original participants. We fill out detailed questionnaires every 6 months. I think we're the only non US citizens taking part.

The study includes tables showing that participants stay on a low dose and do not generally increase, except in the first year when the correct dose is being established.

I really hope your GP agrees to the higher dose. It's within the Mayo guidelines limits.

Fingers 🤞

dickJones profile image
dickJones in reply to Joolsg

Sorry, Jools, I’m just getting link has either moved or no longer exists and a search within the host isn’t producing results.

ChrisColumbus profile image
ChrisColumbus in reply to dickJones

Try this link (Jools got a wandering The on the end)

massgeneral.org/rls-registry

dickJones profile image
dickJones in reply to ChrisColumbus

Cheers, ChrisColumbus, I just noticed it! Data now on board and ready for the perusal of my doctors. (Would it be too cynical to reckon fat chance of that?)

Joolsg profile image
Joolsg in reply to dickJones

Sorry. Edited and now you can use the link.

dickJones profile image
dickJones in reply to Joolsg

Thanks, Joolz, all sorted. Off to battle tomorrow!

PS I'm now creating links for my GP practice to all Massachusetts data having bearing on my situation, but I have yet to locate the all-important findings on opiates and low dependency stats. If anything might shift them, some reassurance on tolerance within the Mayo dosage parameters (even if not holy writ from NICE!) could be it. Could you highlight it for me?

Joolsg profile image
Joolsg in reply to dickJones

The Mayo algorithm doesn't mention tolerance. The Massachussetts RLS opioid study shows that tolerance is rare and most patients stay on the same low dose for years.So that's the one you want to show your GP. There is a chart showing which opioids patients are taking. Methadone is the most common because most participants are in the USA.

In the UK and US, opioid prescribing is under review because high doses of opioids have been overprescribed for fhe last 10 years. For pain, tolerance develops quickly and higher and higher doses are needed. Then it stops working.

There is now an understanding that chronic pain needs different treatment.

In RLS, most people do NOT experience pain BUT opioids work on the opioid receptors and they work very, very well for RLS.

We don't usually need high doses.

It will take years to reeducate the medical profession on RLS and low dose opioids.

That's why we urgently need trials of Buprenorphine and methadone.

The US rls foundation is currently campaigning to have RLS treated in the same way as sickle cell disease - so that doctors can keep prescribing them for RLS.

After all, morphine was the first ever medication used for RLS by Dr Willis in the 1670s in London.

Joolsg profile image
Joolsg in reply to dickJones

massgeneral.org/rls-registryIf you click on the link for 2 year longitudinal study, you will see it makes clear that tolerance does not happen and the dose remains low.

I can't send a link to the 2 year study here for some reason.

Joolsg profile image
Joolsg in reply to dickJones

Just to clarify, you mention 0.4mg but I think you mean 4mg. As I recall, the pharmacist raised a query because you were on 4mg.I still think 4mg should be allowed by your GP because it is within the effective dose guidelines in the Mayo algorithm.

My dose is on the very low side.

dickJones profile image
dickJones in reply to Joolsg

Cheers, Joolz!

Ticki profile image
Ticki

I take an 8 mg pill nightly for my restless legs and a quarter of a Xanax to sleep and I do pretty well so far

dickJones profile image
dickJones in reply to Ticki

Thanks Ticki, that sounds where I should be at!

Joolsg profile image
Joolsg in reply to Ticki

Is that 8mg or 0.8mg (800mcg)? I just want to make sure there's no confusion.The average dose for RLS is 0.5mg.

Just so Dick is aware that 8mg is much higher than average.

dickJones profile image
dickJones in reply to Joolsg

For 7 nights now I’ve been on a 2mg tablet at 21.00 and a second 2mg tablet at 23.00. Therefore 4mgs a night.

dickJones profile image
dickJones

Back firstly with a simple interim query. I’ve just had my ferritin levels checked and they’re at 98. Would I be correct in reckoning this to be on the low side?

My adventures with sublingual Buprenorphine continue. I’ve been on 0.2 mg for 2.5 weeks and after the complete disappearance of my PLMs for the longest time since the condition was diagnosed and the nightly dominance of REM sleep sequences, the situation has suddenly reversed. During last night and the night before the PLMs returned and sleep fragmented into 30/40/50 minute sequences with only one REM per night. I saw my GP yesterday to ask for a dosage increase to 0.4, to be reviewed after a week. He refused, requiring the thumbs-up from a neurologist. When I asked if until one were located I would have to cope with insomnia, loss of REM sleep and nightly PLMs, he spread his hands in regretful confirmation.

I introduced him to the Mayo Clinic recommendations, pointing out the dosage parameters, but, in the absence of a NICE equivalent, he’d rather go on first his own cognisance (which admits ignorance of RLS/PLMD) and then a dosage okay from a specialist. So I’m caught between a rock and a hard place, facing indefinite insomnia, short scale sleep and active PLMD. Any advice..?

dickJones profile image
dickJones in reply to dickJones

PS to the above. End of the line. The doctor refuses to raise my Buprenorphine dosage above 0.2 mg, which very rapidly became entirely inadequate. I shall run out of tablets by Saturday night, having depleted stock way before its month’s supply by doubling doses simply in order to get through the night. I’ve tried everything. I sent them the Mayo Recommendations plus the Massachusetts findings on low opioid dependency, argued every step of the way, countered the absurdity of a defence that places spurious notions of litigation above compassion and duty. But times have changed; the pandemic and the politics of greed over need have torn the heart out of general practice. For my part, I haven’t a clue what to do next.

Ephemera profile image
Ephemera in reply to dickJones

Same problem here. Our GP actually said the cost of the Buprenorphine pills were expensive and wants letter from neuro before considering! prescribing. Our nhs neuro is away until 20th and we would have to pay again for private neuro to do it. Now gone back to normal codeine at night, seem to get a couple of hours sleep which is better than none. When will this ever end. All our GP thinks about is cost before patient care.

dickJones profile image
dickJones in reply to Ephemera

Seems that the pre-pandemic doctors all quit in a mass, driven out by bureaucracy and business ethics over medicine. Now it’s just soulless kids and jaded time-servers left.

dickJones profile image
dickJones

Latest on the Buprenorphine wars. A second doctor, more biddable than the first, has prescribed me Bup Sublingual at 0.4 but declared that he won’t titrate further without confirmation from authority.

But I fear that 0.4 isn’t going to do it. I’m in bed now 1 hour into the tablet and after a moment’s doze a PLM started. And it was more resistant to walking off too so another tough night ahead, I think.

One important question this side of tonight’s journey (which will be entirely redundant if PLMs are simply going to run the game!). When prior to getting these these ‘official’ 0.4 tabs today I doubled up my last few 0.2 pills earlier in the week I experienced both insomnia and short scale sleeps - i.e. slumber sequences lasting 20 to 40 minutes and then ending abruptly. Is this a combination familiar to those of you for whom insomnia has been a particular side effect? And if so, did you either find that they subsided after a while or were treatable with sleep medication If I can separate those two sleep issues from the periodic limb movements then I’ll have a clearer sense of my options.

Right, lights out. Here goes…

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