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Restless Legs Syndrome

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Buprenorphine not working

keiralee profile image
13 Replies

Hi, I have been taking 0.4mg of Buprenorphine for around 8 weeks. At first, it managed my rls. Now, gradually it is creeping back in the evening. Each evening it is getting slightly more of a problem. I take 0.2 mg at 9pm and 0.2 around 12 or 1,o'clock. I also take Trazadone for the opioid insomnia. So disappointing, has anyone experienced this. Has anyone had to increase the dose?

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keiralee profile image
keiralee
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13 Replies
Madlegs1 profile image
Madlegs1

Triggers????

Medication,

Food and drink

Ferritin level

Diet???

keiralee profile image
keiralee in reply toMadlegs1

Hi, Madlegs 1I don't usually have triggers and I cannot think that anything has changed. Only that I feel quite depressed which is a feeling I have not experienced before Buprenorphine.

Thank you for replying.

SueJohnson profile image
SueJohnson

It's common to have to increase one's dose in the first year.

RiversW profile image
RiversW

I have been takin g Buprenorphine for 7 months, 4 months with the patch and 3 months taking tablets. With the patch I had to move from 10mg 7 day patch to a 20 mg 7 day patch to cover symptoms. With tablets, I take a minimum of 1.5 mg and sometimes 2 mg to cover my RLS symptoms for 24 hours. Though I wish I could get by with less to minimize side effects, for me the dose that works seems to have settled in this range. Hope this helps.

Typicallygaslit profile image
Typicallygaslit

A number of us do experience depression from Buprenorphine and it gets worse the higher the dose. I would consider that Trazodone may be contributing to this as well. There is something called serotonin syndrome and if you take two or several of the black listed drugs together, you can get serotonin overload which can cause all sorts of havoc to those who are sensitive. So for some of us it may be very difficult to combine the opioid (black listed) with something else that also has an effect on the serotonin levels. I appreciate that your situation is difficult, it is for me, too. I’ve been taking a small amount of Tramadol along with benzos to help me sleep but it’s not going very well unless just getting sleep is considered a victory of sorts…. However I have not been increasing Bup.

Joolsg profile image
Joolsg

What brand are you taking? I ask my pharmacist to get Accord brand.

Whenever it is out of stock, I have to use Sandoz, prefib, morningside. I then get RLS every evening severely between 7 and 10 pm. So I have to add 0.1mg at 6pm.

But on Accord, I get zero RLS.

It could be that you've been given a different brand.

But, it's very common to increase the dose in the first 12 months.

0.4mg is VERY low.

So, if it's the brand, try to get the same brand you were prescribed in the first 2 months.

If not, then simply increase by 0.1 or 0.2mg.

Explain to your GP that upward adjustments are common in the first year, as per Dr Winkelman's opioid register results.

massgeneral.org/rls-registry

keiralee profile image
keiralee in reply toJoolsg

Hi there, it is Accord at the moment it swit he's between Accord and the other one that you can cut easily. There is no way they will give me a brand of my choosing. I have enquired before about something else. Plus I am given 28 pills and cannot re order until 3 days before I run out so no chance of accumulating any. I have contacted my neurologist, hopefully he not on holiday. I cannot go on like this. The depression and the insomnia and rls in the evening. Too much. Someone on here said the Trazadone may be making it worse but it dies give me a couple of hours sleep.What do you think

Joolsg profile image
Joolsg in reply tokeiralee

Trazodone is the usual anti depressant for opioid induced depression,so I would stick with it for now.I experienced severe anxiety/panic attacks on Buprenorphine. Pregabalin has stopped it completely and helps with sleep. So you could ask to switch to that to see if it works better than trazodone. I only need a tiny dose, but Dr Buchfuhrer originally emailed me to suggest up to 150mg. Pregabalin is a sedating drug so definitely helps opioid anxiety and insomnia.

But clearly, if you're experiencing breakthrough RLS in the evenings, you need a higher dose of Buprenorphine.

The average is about 1 to 1.5mg. Show your neurologist Dr Winkelman opioid study and the Mayo Clinic Algorithm and RLS-UK website so he can see the average effective dose.

keiralee profile image
keiralee in reply toJoolsg

Thank you Joolsg

Ticki profile image
Ticki

hi, yes I had to increase my dose unfortunately over six months up to .8 which has worked for about 3 1/2 years now ,so it takes finding that sweet spot. I also know that I just dis continued my trazodone because it actually started to affect my sleep when it had been helping, that’s what’s happened to me.💜

keiralee profile image
keiralee in reply toTicki

Thanks for your reply.

Claire_lc profile image
Claire_lc

Hi Keiralee, I’ve had to increase my Buprenorphine dose from 0.2mg in April, to 0.3mg in July, and now up to 0.4mg. Last night I had to take an extra 0.1mg as I could feel the RLS breaking through. I’m not concerned though because, as others have said, this is still a very low dose, and the consensus does seem to be that there can be a need to increase the dose in the first year to find your ‘sweet spot’.

The more you overthink it, the more anxious you become about the whole opioid thing. I try to focus on how amazing I feel now that I can sleep. Nothing in the world can be as bad as never-ending sleep deprivation.

Narcis profile image
Narcis

I get the same, your dose is very low. Now with a patch (30 mg) I manage a litte bit more my RLS, but still nights for me are very bad time.

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