moving to buprenorphine: currently i... - Restless Legs Syn...

Restless Legs Syndrome

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moving to buprenorphine

thorp profile image
5 Replies

currently i take 1200 gaberpentin and 750 microgram clonazepam

I am still having disturbed nights

From this very useful forum i have leant that buprenorphine could be ideal for RLS sufferers who have tried everything else.

So i want to talk with my GP about moving onto buprenorphine.I would be most grateful for advice about;

what kind of buprenorphine should I move to ie patch or sublingual

what dosage should I start with

How do i best move from my current gaberpentin and clonazepam over to buprenorphine

Thank you for any help

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thorp
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5 Replies
Joolsg profile image
Joolsg

I use Buprenorphine pills. I take 0.4mg. I use a pill cutter and take half at 9pm and half at midnight. Zero RLS. I sleep 8 hour's every night.However, I did experience SEVERE nausea for the first 10 days and a racing heart. I stopped the nausea with medical cannabis. I only needed to take it for 10 days and when I stopped, the nausea had gone. You can use Qwells seasickness pills.

I also get head heat flushes and sweats. I take 10mg of cetirizine every night, and that really helps.

If Buprenorphine is prescribed, use it for a week or two before you reduce gabapentin and clonazepam so you know what side effects are from Buprenorphine and what side effects are from gabapentin withdrawal.

When you are stable on Buprenorphine, reduce gabapentin first. Very slowly. Split the 100mg pill and drop 50mg every 2 or 3 days. I reduced even more slowly from pregabalin. I took 6 months to get off 150mg as I didn't want any withdrawal symptoms.

Then reduce clonazepam. Very slowly.

SueJohnson profile image
SueJohnson

Since pregabalin helped you for awhile and since according to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin." I wouldn't give up on it until you increase it by 100 mg every couple of days until you get to 1800 mg and you will know within 2 days if that works. If not you can reduce at the same rate back to 1200 mg and then decrease by 100 to 200 mg every couple of weeks so you have no withdrawal symptoms. And I agree with Joolsg to wait before making the reduction from 1200 mg until you have been on buprenorphine for a week or two.

Your GP may not want to prescribe an opioid. If so print out the section of the Mayo Clinic Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a... that discusses opioids.

Simkin profile image
Simkin

Hello Thorp, gabapentin alone did not work for me so I now take low dose buprenorphine TABLET alongside gabapentin (which I have now reduced from 2,100mg to 900mg) and thus far my rls has disappeared. Bliss.I do feel dopey during the day & have to have a 45 minute sleep in the afternoons) but at our age, so what & anything is better than those nervy legs.

Best of luck. Simkin (UK) 73yrs female.

Simkin profile image
Simkin

Meant to say the tablets are sublingual SF 200mcg.

Heatherandgorse profile image
Heatherandgorse

Hi Thorp

I have been taking Buprenorphine sublingual tablets for just over a year.

I am prescribed 800 mcgs daily. 4 x 200 mcgs tablets Sometimes the chemist gives me Temgesic, a brand name of Buprenorphine.

I find that Temgesic dosn't seem to last as long as Buprenorphine, even though it's supposed to be the same thing.

In theory Buprenorphine should last 24 hours.

So, because I am getting Temgesic as opposed to Buprenorphine most scripts, I have taken to a 'spread it round the clock' system.

I take 0.200 mcgs at 2 or 3 am whenever my legs dictate, 0.200 mcgs at noon, 0.200 mcgs at 7pm and 0.200 mcgs at 10pm.

This works well for me.

So you may want to play around with the dosage that suits you.

I do have side effects. Although I can't be 100%, I am fairly certain that my lack of any appitite and my disturbed sleeping is down to Buprenorphine.

Untill something is discovered/invented, this is the most effective med' for me so far :) Thank you team!!

One thing I would like to mention. When my R Limbs 'discomfort' was at it's height, back in the day, I had heard of Oxycodone, and asked my gp for it. He prescribed and although great at first. I found after a year my body needed to up the dose to get the same cover.

My GP refused this and I had a very difficult time finding a private neuroligist that would prescribe Buprenorphine. Joolsg was instrumental in directing me to a helpfull neuroligist.

I found out on this site that Buprenorphine is 'kinder' on the body and not likely to ask you to up your dose to achieve the same cover.

My gp gave me Oxycodone out of lack of knowledge about what is the best drug for those that have tried everything. Certainly way better for some is Buprenorphine.

It is sad that people have to go through this mis-prescribing, although Oxycodone works for some.

I wanted to bring this up in case your gp mentions Oxycodone first. Then you can go aquipped with my experience.

I hope your appointment goes well and wish you luck.

Ps. Although my sleep is broken, I do find Clonazepan helps. I take 0.5 mcgs x3. Some medics may be reluctant to prescribe this if you are on opiods, see how it goes. Dig your heels in if you have too.

This is your body and your body needs sleep. Especially as we get older.

:)

Pps, I am going to ask my chemist to try and obtain Buprenorphine as opposed Temgesic and will then reduce my dosing to evening only but same dosage.

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