Buprenorphine - what are the pluses?

[dickJones]

I'm currently on 1800 mgs of Gabapentin, which, after a brief reprise, is failing to suppress my PLMs sufficiently. They wake me up and I continue to experience them until they're dismissed by walking up and down. I have just been issued with a Buprenorphine patch. I'm acquainted with the various side effects via both medical sources and anecdotal accounts and I would be grateful for any positive feedback on the treatment's effectiveness.

[LotteM]

Well, I sleep very well on it, it suppresses my symptoms completely except for the 7th night. And only needs to be replaced once a week.

There are minuses too. If you want to know search for other posts and replies using the word 'buprenorphine'.

How strong is your patch? Mine is very low at 5 mcg/h; most others need 15 mcg/h.

[Ebi1909 in reply to LotteM]

Did you change to the patch?

[dickJones in reply to Ebi1909]

Not yet.

[dickJones in reply to LotteM]

Thanks for your reply to my question, Lotte. I've read of the minus factors here, hence my hesitancy in starting the patch. My patch is on mcg/h so I'll await results and consult with the sleep clinic doctor who recommended Buprenorphine if titration seems necessary.

[restlessstoz]

I too am on the buprenorphine patch and find it very effective. The only side effect that bothers me is that it makes me alert at night and I've had to use gabapentin which has enabled me to sleep soundly. Constipation can also be a bit of an issue but I take Movicol and that solves the problem without drama.

[dickJones in reply to restlessstoz]

Thanks for your experiences of the patch. I'm on Gabapentin now so the wise course might be to maintain dosage after starting the patch.

[restlessstoz in reply to dickJones]

I only take 300 mg gabapentin. Even 100 made a difference so don't over do it. If you're going to go on the patch, you can reduce it a lot as per the instructions for reduction that you'll find on HU. Good luck.

[dickJones in reply to restlessstoz]

Thank you!

[SueJohnson]

You may not be taking the gabapentin correctly, thus reducing its effectiveness. You should take it 1-2 hours before bedtime. If you need more than 600 mg take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If you need more than 1200 mg, take the extra 6 hours before bedtime. If you take magnesium, take it at least 3 hours before gabapentin as it interferes with the absorption.of gabapentin. Have you had your ferritin tested? If so what was it? Increasing it to 100 or more reduces symptoms in 60% of people. If you take any other medicines or over the counter supplements, if you list them here I can tell you if any of them are likely to exacerbate symptoms and can perhaps give you a safe substitute.

[SueJohnson]

Also, were you ever on a dopamine agonist?

[SueJohnson]

Also you may need more gabapentin. Although 1800 mg is enough for most people, it can be increased more by adding 100 mg every couple of days until you find the dose that controls your symptoms. The maximum is 3600 mg. Since this would mean taking the extra above 8 hours before bedtime, it would be better to switch to pregabalin where you don't have to split the doses and can take it all at once. Divide the amount of gabapentin by 6 to get the correct amount and then increase by 25 mg. If you were ever on a dopamine agonist, however your dopamine receptors may be permanently damaged which is why gabapentin isn't working. If you decide to come off gabapentin do it very slowly to avoid withdrawal effects.

[dickJones in reply to SueJohnson]

Many thanks, Sue, for your detailed response.

I take the Gabapentin in 3 lots of 600 2 hours apart - 7.30, 9.30, 11.30. Although there has never been an even positive response since re-starting it (I was on 900 mg of Gabapentin 2 years ago), until recently it's kept my PLMs down to around 2 within its half-life and 1 or 2 beyond and nights at best have averaged 3 or 4 REM sleeps in between the PLM attacks (experienced awake, by the way) and total interrupted sleep has averaged 6.30 hours. Now I'm having 3 to 4 PLM bouts nightly plus the usual 20 - 30 minute walking and leg exercising needed to quell the PLMs so sleep time is significantly disturbed and reduced.

I had my Ferritin level checked a year or so ago. I don't recall the precise result, but it was significantly above 100.

Other meds: Abiraterone for prostate cancer; Prednisilone to offset cortisol side effects; Losartan, Felodipin and Indapamide for blood pressure. I've checked all of them on drugs.com against the Gabapentin and I found no significant interactions. I have Obstructive Sleep Apnea and I wear a CPAP mask nightly. After the initial disappearance of my PLMs following OSA diagnosis and the wearing of the mask, they resumed after a month or so and have continued ever since. I appear to suffer from idiopathic PLMD. (The OSA is successfully treated by the mask).

I was on Ropinirole successfully for about 8 months some 3 years ago, but withdrew after augmentation.

Prior to this course of Gabapentin I was on Pregabalin successfully at 450 mgs, but withdrew after 15 months when it ceased being effective.

That's my history and those are my current medications. The Buprenorphine patch was recommended by the head specialist Dr. Mike Davies at the Royal Papworth Hospital sleep clinic. I've held off obtaining it from my pharmacy for a few weeks because of bouts of okay nights on the Gabapentin, but current experience indicates that it's running on empty so I intend to wear the lowest dosage patch from today.

[SueJohnson in reply to dickJones]

Losartan can worsen RLS. You might ask your doctor for an ace inhibitor type since these are safe for RLS, or Propranalol which has actually helped RLS for some. Felodipine is a calcium blocker and they are known to make RLS worse. Indapamide is a diuretic and they are known for making RLS worse. You might want to try dipyridamole if the gabapentin doesn't work as it is being used to treat RLS by some on this forum and another one I am on. movementdisorders.onlinelib... sciencedirect.com/science/a...

[dickJones in reply to SueJohnson]

Thanks again, Sue. Your time and attention is much appreciated.

My nocturnal problem is entirely PLMD, not RLS, but I guess it's safe to presume that as for one so for the other, their provenance being so similar. I'll try to find a doctor at my surgery who'll listen for long enough to consider changes to my blood pressure meds. The pandemic seems to have turned them all into impatient clock watchers!

I'll try the patch tonight and see how things pan out over the next week or two. I'm acquainted with dipyridamole and have the study at the end of your link. I mentioned it as a possible alternative to the Buprenorphine that my sleep centre doc was proposing, but he seemed unaware of its role as an RLS medication. I'll have a go with a GP, but won't hold my breath against him/her reading up on it.

[SueJohnson in reply to dickJones]

Good luck.

[dickJones in reply to SueJohnson]

🤞🤞

[dickJones]

A PS to my enquiry on Buprenorphine. There's no information on the pack about water resistance. Is the patch shower proof?

[LotteM in reply to dickJones]

Yes. I have been using one since January this year. I take a shower every morning. Just take a little care when rubbing dry. Personally I never or very rarely use soap or showergels etc. Only when I really am dirty.

Just curious: have you started the patch? If so, what are your first impressions? I really hope it works well for you.

[dickJones in reply to LotteM]

Not yet. Partly caution re practicalities such as showering plus side effects, but also, I have to admit, fear that it simply won't work. I'm right at the end of the meds trail, having tried all the mainstream options. Now there remain only Buprenorphine, Dipyridamole and cannabis. So there's a lot riding on it. But now that you've cleared the showering issue - and thank you for that - tonight's the night!

[LotteM in reply to dickJones]

I'll keep my fingers crossed! When I asked about your dose, the number got lost, so I al assuming the lowest dose of 5mcg/h. It may not be enough, but I really hope you will notice a marked effect. If the patch suits you but you need more, you can up the dose. I think higher dosed patches are bigger, thus you may be able to adjust by eg adding half a patch at first. - if needed. I hope you sleep well tonight!

[dickJones in reply to LotteM]

Yes, the dose is the lowest. But I didn't start it last night after all. And weirdly, as if conscious of being about to be replaced, my 1800 mgs of Gabapentin gave me 7 hours with only 1 PLM attack and 2 substantial REM sleeps. These brief sequences of high level REMs and low level PLMs do happen from time to time. But then they default back to the reverse equation.

So the argument is, of course, titrate the Gabapentin up through the next two levels and withdraw when it's clear that it's no longer suppressing the PLMs and clearing the ground for long form REMs. But I'm reluctant to increase the brain fog and weight gain and then, after a relatively short period of PLM comfort, face a lengthy withdrawal period. So I shall hold the dosage at 1800 mgs and introduce the patch as soon as this inevitably brief period of decent nights ends.

What a bloody game it all is! And all managed with minimal help from the medical profession. That's got to change and soon. But in the meantime my sincere thanks to the patient experts here on Health Unlocked!

[dickJones in reply to dickJones]

Well, a week and a half on from wearing the Buprenorphine patch and no change at all. Still the great tugging PLMs, still the nocturnal tramping up and down to get rid of them. Such relief as I occasionally get each night is from the last fumes of the Gabapentin at 1800 mg. I might just titrate up to 2400 and hope for a month or two's relief. Disappointing.

[LotteM in reply to dickJones]

That is a bummer, Dick. However, have you considered that the dose may be too low? You never gave the actual number, but assuming the lowest dose of 5mcg/h. That translates into 24x5=0.125mg a day. A dose even lower than one Temgesic tablet. Several other people with the bup patch have reported to need 15mcg/h.

Would it be an idea to discuss with your doctor to try sublingual buprenorphine/Temgesic first to see if and how you react? The tablets are easier to adjust. For example they start to work after 0.5-1.5h and you can add another (or half) after that time if the first is not enough and you are not hold back by side effects.

It is a difficult search, isn't it, to find a successful treatment.

[dickJones in reply to LotteM]

It's a long and constant nightmare, the search, and I've done pretty much the entire med list. Opiates were the last option.

So if I put on 2 patches to a value of 10 mch/h, would that be a potential fix before requesting the sublingual form? I'm running the entire show myself here. I got the scrip for the patch via the sleep centre doc, not my GP. My local surgery is a joke: a bunch of anonymous, clock-watching phone voices, impersonal and in the case of RLS/PLMD, pitifully ignorant. So would I need the thumbs up from one of these androids or would it be okay just to double up the dosage myself?

Your support is much appreciated, Lotte!

[LotteM in reply to dickJones]

Dick, I am not a medical doctor. However, if you got the script and have a few to spare, you could try adding another patch. To assess whether it works, you need to wait about 12-24h, as it takes some time to build up. If you can tolerate tue patches well, maybe you could try -say- as many as three patches, but one at a time, at least a day apart. Bu the third day, the first patch should still be 'active' for a few more days. Be mindful of side effects; some people get nauseous on buprenorphine, others sleepy or.. well have a look at the listed side effects on the info leaflet. If you feel safe to do so, it may be a good way to find out what and how much works for you. You can then report back to thedoctor that prescribed the patch for you.

In any case, I would go slow, like with withdrawing from any strong medicine. Also when building up, going slow may allow your body to adjust to side effects.

Again, I al kot a doctor. Just truing to help you with careful thinking. And information. Such as that some people need quote high doses. For example Shumbah is on sublingual tablets and needs 1-2mg a day. That is substantially more that you take now and even with three patches of 5mcg/h.

If you are going to try, I hope one or two more will do the trick, the lower the effective dose the better. At least in my book. Good luck, stay safe and let us know.

[dickJones]

Many thanks for the thoughts, Lotte. I'm clear of patches currently. Tonight (it's 10.36 pm now) I'll try 2 together, which will = 10 mcg/h. I'm still on 1800 mgs of Gabapentin, but as stated it's run its course and if Buprenorphine were to work for me at double the basic dose, I'd detitrate the G at 100 mgs day by day. I'll report back.

[dickJones]

O2. 50. Sitting on the edge of the bed. Two PLMs so far and no REM sleep. Two Buprenorphine patches - no side effects, no benign effects, in fact, as much help as a couple of bits of scotch tape. Beyond disappointing.