More help please

[thorp]

I am 82 ,live inUK, and have severe RLS and PLMD

I have tried most everything unsuccessfully until finally, a few weeks ago ,my neurologist

agreed that i could move onto Buprenorphine

My Gp agreed

I was on 1800 mg gabapentin, 0.5 mg clonazepam

My Gp put me on 200 microgram Buprenorphine and told me to reduce the clonazepam slowly

This forum had suggested i start by reducing first the gabapentin.

But the GP was adamant

On 7 nov I started my Buprenorphine

As many people on this forum will recognise the immediate results were amazing.

Everything became much calmer. The electric shock type jerks and twitchings went and i had much more gentle movements

I woke up around 0230 to 3, walked half an hour, went back to bed, woke again around 6,did a bit of walking and then slept through until 0830 or 9

So I felt the time was right to reduce the clonazepam

On 13 nov ,after 6 good nights, I reduced the clonazepam by 0.125 to 0.375

Again the movements remained much more gentle, my amount of non sleep as opposed to sleep remained low but gradually the stronger twitching started to come back

However , since things were still reasonable, on 19 nov , after another 6 nights, i reduced clonazepam again by 0.125 to 0.250.

Now after 14 nights on 0. 250 clonazepam 1800mg gabapentin and and 2 microgram Buprenorphine, my nights are more mixed.

I am still getting some good nights

But they are now interspersed with some more poor nights with more non sleep.

And in the last few days I have had a return of some of the more frightening electric shock type jerks and twitchings

Some of these poor nights can possibly be explained by my having eaten some questionable foods at lunchtime. But some seem to have no explanation

Except maybe symptoms of withdrawal from the clonazepam

I have an appointment with my GP on Friday to discuss my progress

What should be my next steps? What please should I say?

As ever, my deepest thanks to all of you for your help in the past. And I am sure for your help now

[Madlegs1]

As always--- let your body tell you how quick to go down.

What do you think it is saying to you at the moment?💚

[SueJohnson]

I would increase the buprenorphine and slow down the reduction of clonazepam.

[Joolsg]

200mcg of Buprenorphine is very, very low. On that dose, my RLS would wake me up from 3am onwards. Adding another 200mcg just before sleep was transformative.So, I agree with SueJohnson. Increase Buprenorphine and slow down clonazepam reduction.

[Claire_lc]

I'm in the same situation. Buprenorphine working brilliantly since May (starting dose of 0.2mg has now settled at 0.4mg), and I've been trying to come off 1mg clonazepam now it's not really needed.

Like you I've had mixed results with tapering. My consultant recommended 0.125mg reduction per month. I tried that and my body rebelled at 0.5mg. So I went back up to 0.75mg and started reducing half as fast. So now I reduce by 1/8 of a 0.5mg tablet for a whole month before reducing again. A cheap pill cutter from Amazon is really helpful.

I've gone from 0.75mg to 0.6mg like this, and so far it's been ok. A doctor once told me you have to reduce much more slowly than you think. So slowly in fact, your body barely notices.

I'm happy doing this as my sleep is my number one priority and I don't care if it takes me a year to come off completely, so long as I get there in the end.

In short, I agree with Sue and the others above. I really hope this helps.