Advice re Buprenorphine patch - Restless Legs Syn...

Restless Legs Syndrome

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Advice re Buprenorphine patch

Nanpat profile image
20 Replies

I started Bup 5mg patch 4 weeks ago, had no RLS symptoms for 7 days, was unbelievable.

Now it is back with same frequency but pain has gone from a 9 to 2/10.

For those who got relief with patch what strength were you on? Was this only medication used….any add on meds?

My Dr wants to double patch strength but I’m reluctant due to side effects. Could I add on a Bup table at night or is it best to get a higher patch?

Many thanks

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Nanpat profile image
Nanpat
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20 Replies
dancer2 profile image
dancer2

I use Belbuca (a buccal patch) 150mcg twice a day ( 2:30 pm and 9:00 pm). This is another form of Buprenorphine. It seems to work fairly well. I do have some residual tiredness but am sleeping 6 to 7 hours each night. Not sure if this helps. I am concerned about the recent discussion about dental effects.

Nanpat profile image
Nanpat in reply to dancer2

Thanks for your reply, will be discussing answers with my gp

LotteM profile image
LotteM

Nanpat, I already answered to you in the other post. May I ask what side effects you are experiencing that make you hesitate to accept a higher dose? Patches can be cut, thus you could also consider to add half a patch and see how you react.

Nanpat profile image
Nanpat in reply to LotteM

I didn’t know they could be cut, thxI just don’t feel myself, no energy or drive, extremely dry mouth (which I had on Targin but is worse now), feeling miserable, falling asleep in evenings sitting up! That is before my RLS comes on! They may settle in time, I’m not sure.

ChickenTwisty profile image
ChickenTwisty in reply to Nanpat

Actually whilst some GP will recommend cutting it you will find manufacturers recommended not to cut the patches (refer to your pharmacist or included documentation). Not all patches reliably centre the active portion of the patch and it can result in incorrect dosages, additionally cutting results in the adhesive border missing on one side increaing likelihood patch will come away from skin on that side. A better solution is to apply a small patch of non-permable (water proof) retention bandage to the site then place your patch over the top. Most retention bandages come with a 5x5mm grid on the backing paper, this allows you to accurately control the reduction.

How?

1. measure the length of active area of patch (varies by manufacturer and dosage)

2. divide strength of patch by length of ACTIVE PORTION of the patch e.g. my 10mg patch is 5cm long, so each cm = 2mg.

3. cut a small strip of retention bandage e.g. to reduce my 10mg patch to 7 mg I cut 3 squares wide, (= 1.5cm)

4. Place strip of retention bandage on skin, place patch over top.

Nanpat profile image
Nanpat in reply to ChickenTwisty

Thanks for detailed instructions, however I don’t feel confident to cut the patch, also believe it’s not really recommended.If somethings going to go wrong it will with me.

Joolsg profile image
Joolsg

Clearly the 5mcg patch is not covering your RLS so it would seem a higher dose is required.However you mention you feel miserable and have no energy. Doubling the dose might stop the RLS but might also worsen the side effects.

I have very dry mouth, little saliva a d definitely have anxiety on Buprenorphine. I counter it by using biotene and saliva replacement spray from the chemists. I also take 25mg pregabalin around 3 am when I wake to go to the loo and that reduces most of the anxiety.

I wonder if you could try the pill before you double the patch? It's easy to cut the pills and take the smallest dose that covers the RLS.

I'm on 0.4mg taken in 2 doses. 0.2mg at 10pm and 0.2mg at 12.30am.

It's trial and error.

Nanpat profile image
Nanpat in reply to Joolsg

Thank you very much for your opinions, Will now know what to ask my gp who has little knowledge about rls.Seeing her today as I lost my next patch😏

I also use biotene and have a mouth spray, take 75 mg lyrica at night too.

Kind wishes 😊

Nanpat profile image
Nanpat in reply to Joolsg

Ps would you say your rls is fully under control or do you still have some bad nights?

Joolsg profile image
Joolsg in reply to Nanpat

My RLS is completely under control. I have slept 7 or 8 hours every night since July 2021 when I started Buprenorphine.Before that, I had 6 years of nightly, very severe RLS.

Side effects of Buprenorphine are dry mouth, lack of saliva.I had severe nausea when I started ( which resolved with medical cannabis) and panic attacks which I resolved by taking 50mg Buprenorphine for 4 weeks. I do still get underlying anxiety/panic some days but I have started 25mg pregabalin at night again and it is controlling it.

I hope you find the dose and timing that stops all your RLS. My dose is low but Shumbah takes 2mg in pill form every night and the average dose is 0.6mg so you are still below average. I think the pill would possibly work better for you by giving you most of the effects at night.

Nanpat profile image
Nanpat in reply to Joolsg

Appreciate all your comments and am glad you are finally symptom free. Long may it last!Saw my dr today, don’t understand why some gps won’t listen to what you want, even though she admits I know 10x more than her about rls.

I asked for pill at night and was told it can only be prescribed if you are withdrawing from opioids. I have just stopped targin after 5 yrs!

Also it’s not on pbs in Australia?

Was given 10mg patch and feel awful tonight, bit short of breath.

Have rls again tonight as well, will see how I fare over next 2 weeks 🫤 then maybe plead my case again.

Joolsg profile image
Joolsg in reply to Nanpat

It clearly depends on the doctor. Shumbah and Jules are both on the sublingual pill in Australia. Try messaging them and they may provide relevant Australian information / research which will persuade your GP to prescribe the pill form.

Nanpat profile image
Nanpat in reply to Joolsg

How do I find where to message them? Thanks

Joolsg profile image
Joolsg in reply to Nanpat

Go to the top of the page and you'll see Home Posts Members About

Click on members and type Shumbah and Jules1953 in the search.

When their names appear, click and it gives you option to message privately.

Doreenw profile image
Doreenw

Hi I have been on the norspan patch 10 mg for 2 years with no side affects.I have been RLS free for so long, that I have on one occasion thought it was gone and not put a patch on !! Big Mistake, it was back again within2 days.

Rwall profile image
Rwall

I was on the 150 patch once a night, but found it to really make me groggy. I now take .5 mg of the 2 mg sublingual tab (which I think is the smallest they make) every night, along with a very small amount of xanax each night...like a quarter to a half of the smallest dose they make. That regimen seems to work for me most nights, but I am quite tiny.

Nanpat profile image
Nanpat

Thanks for your input

Dougg profile image
Dougg

I'm on a 20mcg patch, with oral supplementation. I find that the oral supplementation is needed during the evening and toward the end of the 7-day period when the patch is starting to wear out, but that the patch is enough during the day when it is at its most efficient. I think it does take some experimentation to figure out what dosage and combo will work best for you.

grandpianoman profile image
grandpianoman

I recommend you increase your dosage a little at a time till you find your "sweet spot." I've been using the buccal patches (not sublingual, but between cheek and gum) for a couple of years now. I'm on a low dose--1.30 mcg (one and a half patch) to 1.5 mcg (two patches) only in the evenings unless I eat sugar or gluten. It gives me no side effects except perhaps some sleepiness some days, which I attribute to sleep loss due to apnea, not to the buccal. I am able to live quite normally now, but I now also have complex apnea--both obstructive and central apnea. I lose more sleep due to that than to RLS because of dry mouth associated with the CPAP machine. I am wondering if there's a connection. Do opiods (not just buccal but the others I tried before buccal) cause apnea? The warning on the box warns about possible breathing issues. Anyone?

Nanpat profile image
Nanpat in reply to grandpianoman

Thanks for reply, my gp isn’t being very flexible. I’m on 10mg. 7day patch even though I only wanted tablets at night.I also have sleep apnea, not sure now if it started before opioids or after.

And yes they are known to sometimes cause breathing issues.

However my cpap readings are what I go on and they are quite good.

I use biotene mouth rinse for dry mouth and also have a spray to use before sleeping.

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