Buprenorphine: switching on and off ... - Restless Legs Syn...

Restless Legs Syndrome

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Buprenorphine: switching on and off like a light.

dickJones profile image
17 Replies

I'd be grateful for help with this. I've been on a pair of 5+10 Buprenorphine patches for 4 weeks now. For runs of 3 to 4 nights in a row they work like a dream - long REMs and no PLMs. Then suddenly they seem to switch off and it's as if I'm medication free - short-scale sleeps, insomnia and punishing PLMs. On occasion they return to partial efficacy; more often I have to go to the end of the week's cycle sleeplessly and then start the next week with new patches. Does this match anyone else's experience or am I just Buprenorphine averse?

Al

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17 Replies
Madlegs1 profile image
Madlegs1

Perhaps you are in a medical trial, where they have put you on alternating real and placebo meds?

Or you could be unknowingly switching universes every few days.

I'm thinking you need to be considering very carefully your involvement with such dire forces.

Or- it could be that you are taking triggers that are affecting the Buprenorphine?

Realistically, I'd be checking out the last option!🤔😝😎

dickJones profile image
dickJones in reply toMadlegs1

Thanks, I'll check again. The last one, that is!

LotteM profile image
LotteM

It sounds a bit like someone else's experience (Jelbea). For her the 7d patches take more than a day to start working and they cease working after about day 3. I have very vaguely experienced something similar the last two weeks, when it seemed my patch became less effective after about 3-4 days. But that was during a walking-with-backpack / trekking holiday. So my activity level was far higher than usual.

Anyway, what I wanted to suggest, is there anything that makes you absorb the medicine in the patches more quickly than intended? For me, I thought my increased activity combined with the heat might have been a factor. Anything similar you can think of for you? Have you thought of talking to your chemist? S/he should know about medicine kinetics.

dickJones profile image
dickJones in reply toLotteM

Since my GP seemed not to have even heard of Buprenorphine, there seemed little point in wasting time with a 9-mile long phone appointment queue. Enquire instead of the Health Unlocked RLS Patient Experts and you'll get a friendly, patient, knowledgeable response!

So thanks, Lottie and Sue, that's certainly what seems to be happening. 3 days is the average lifespan of the patches and then they simply switch off. No increased activity on my part so most likely early burn-out on the part of the patches. I'll check in at the surgery and get an emergency order for more 10s and 5s, enough to cater for half the stated time, then I'll drop into my excellent chemist (who won't start getting fidgety after 10.minutes of consultation, such as happens with GPs these days) and get the word on any known or guessed chemical anomalies. Thanks again, both. I'll check back in with any data created. Others must be having similar experiences.

Joolsg profile image
Joolsg in reply todickJones

Several people on the patch have mentioned that they do NOT last the 7 days. It is possible that you metabolise opioids more quickly than others. Dr. Buchfuhrer has said it is one of the reasons he prefers the buprenorphine sub lingual pills. The other reason he doesn't like the patch is that it gives an even dose throughout the 24 hours but most people with RLS/PLMD need it to be most effective at night only. Many GPs are reluctant to accept the anecdotal evidence that it doesn't last the 7 days.You could ask to change the patch earlier after 4 days OR switch to a low dose pill form.

Madlegs1 profile image
Madlegs1 in reply toJoolsg

That's true of many patches. I had problems with Fentanyl ( Duragesic) not lasting the 3 days.

A combination of limited half-life and fast metabolism in the patient.

The concern with the sublingual/ bucal medication is that a number of people are having dental problems.

The pharmacist should be able to help.

Good luck.

dickJones profile image
dickJones in reply toMadlegs1

Thanks, Madlegs. I'm having problems with my GP surgery about sub-lingual tablets. They're insisting on a consult with the sleep clinic doctor who prescribed the patches in the first place. So I can confidently expect several weeks wait while the poor old damaged engine of the NHS goes through its motions. I've emailed the sleep clinic doc with a reasoned argument for tablets over patches, but I'm no longer his patient so, again, weeks!

Joolsg profile image
Joolsg in reply toMadlegs1

The most recent person posting about dental problems and losing her teeth has only ever used the patch. All forms of Buprenorphine cause dry mouth during the night for many and it's the lack of saliva that causes the tooth issues. The FDA are guessing that the sublingual pills cause an acid environment but I definitely think they're wrong. It's only in the mouth for minutes. Many with teeth issues were on the patch.Biotene products are helpful and I've bought them.

Madlegs1 profile image
Madlegs1 in reply toJoolsg

I understood that it was bucal patches that caused it. Apparently they stay in the mouth for a while.But I haven't used any of these ,so stand to be corrected.

I have a definite feeling that all opioids will cause dental problems,because they promote open mouth sleeping-- as you suggest-- which sounds right.

Joolsg profile image
Joolsg in reply toMadlegs1

I definitely notice Buprenorphine causes very dry mouth & reducec saliva. We'll all have to become Alex Ferguson & constantly chew gum.

Shumbah profile image
Shumbah in reply toJoolsg

I love the sublingual version myself

SueJohnson profile image
SueJohnson

I agree with LottieM. It sounds like your patches aren't working after 3 or 4 nights. Check with your doctor. You may need to put them on more frequently than once a week.

Shumbah profile image
Shumbah

Cover patches with Micropore tape from pharmacy so they are totally sealed this will offer better skin contact and less likely to suffer water damage.

Do not read your sleep pattern with a device as we program ourselves.

I don’t have a clock in my room , I don’t look at the time your bargain actually does not know if you have had 5 or 10 hrs sleep unless you tell it.

You know how if someone talks about restless legs it can set ours off we need to be Concious not to focus on movement or on volume and quality of sleep.

Yes amount of sugar / fake sugar alcohol at night etc.

It is not uncommon for patches to run a day short.

I occasionally cut my sublingual buprenorphine down by a pinhead to see how I go for a few days.

My husband told my ,y legs was chasing hi, across the bed to kixk him, I said that is fi e as long as I don’t know DONT TELL ME. this does not happen on full dose 2 mg .

However as long as I don’t know about my bodies antics I’m happy.

My know people who suffer from panic attacks when they hear people

talking about it all the time..

RIS is a real cruel disease .

I hope you find the answer to your conundrum and my reply helps.

dickJones profile image
dickJones in reply toShumbah

Thank you, Shumbah. Excellent points about running nights 'time-blind', although the act of will I'd have to impose would be overwhelming! Also, my battle is with waking PLMD, which mugs me at night to its own timetable. The covering of the patches is an excellent notion. I'll sort that out at the chemist today.

Jelbea profile image
Jelbea

Hi dickJones - I see your problems with the patches. I have had many problems with the patches and also the sublingual temgesic.I have posted regarding my experiences in case it might help anyone else. I do really feel that I am a very fast metabolizer of the drug and it is not lasting as it should.

I hope you can get this sorted and get the sleep and relaxation we all crave. Good Wishes

W0nk042 profile image
W0nk042

My experience with fentanyl is quite like that period I'm using a patch which is supposed to last 72 hours. After the first month where it worked with no issues, I had to switch to a 60 hour regimen, which luckily has been working mostly well - sometimes, the effect is weak at the end of that period, but by far not as bad as you describe it!

I have asked three doctors about this but none of them had any idea of this is a common problem. I find this quite shocking - how can they prescribe a strong opiate without knowing anything about this??

I hope you'll find something that works for you, please keep us posted!

dickJones profile image
dickJones in reply toW0nk042

I agree absolutely - such ignorance is alarming. Here we have testimony of short-lived patches, but we can only speculate as to why manufacturers' claims are so wide of the mark. How sad it is that we speculate alone. Such is the overall conservatism of general practice and the lack of imagination of so many individual doctors hiding behind their phones that this kind of empirical RLS/PLMD data has no perceived value. A few moments on Google is no substitute for our personal experience and the gold standard research of patient experts. Oh, for just one UK Dr. Buchfuhrer!

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