Transitioning from Ropinirole to Bupenorphine - any advice welcome.

[Faith_Hope_1]

My GP prescribed Buprenorphine for me under the advice of Dr Fackrell.

I began to take the Bup on 14th October, so it will be two weeks on Monday since I began. The symptoms I have experienced so far have been mild, a bit close to panic on occasions and sleepy but otherwise so far so good. However, I do feel at sea with the change over as I don't know how best to approach it.

I began by taking 0.2mg Buprenorphine and keeping the Rop at 1mg for the first two days.

On the third day I had quite severe symptoms early evening so took 0.1mg of Bup then - I continued with the four doses of 0.25mg rop and took 0.2mg Bup at bedtime so I had 0.3mg of Bup in total that day.

I continued to take the four 0.25mg doses of Rop, one during the night as symptoms occured and the others during the day. Alongside I have taken 0.3mg Bup.

On 21st I took 0.4mg Bup and was able to take just three 0.25mg that day/night.

However, really bad symptoms occured at 1am on 22nd so I took 0.1mg Bup and 0.25mg Rop and paced around and around until they settled, I took another 0.1mg Bup at 2am to help with it. I took another 0.1mg twice on that day making a total of 0.4mg in 24hours. Alongside that I took 0.75mg Rop in total on that day.

On 23rd I took a total of 0.3mg Bup and 0.75mg Rop - that was a goodish day as far as symptoms were concerned.

24th I took a total of 0.4mg Bup and 0.75mg Rop but had a severe outbreak of RLS early evening that took some time to settle.

25th I took 0.5mg Bup in total hoping to avoid another outbreak, plus 0.75mg Rop. I did have a bad outbreak in the evening.

Today 26th, I had two outbreaks early hours and took 0.1mg Bup then a little later 0.25mg Rop It settled. Since then I have taken 0.1mg Bup (not due to symptoms - just trying to pace it and take it when it might be most helpful.) I will take another two 0.25mg Rop - one around teatime and another before bed. I intend to take a further 0.4mg Bup in 0.2mg doses (one fairly soon and one before sleep) in the hope that it will help ease any symptoms during the night.

This may not make any sense to anybody else and I apologise for that but if there is anybody out there who can advise whether I am approaching it in the best way. Dr Fackrell said that I can take up to 0.8mg in divided doses over a 24hr period if symptoms are not controlled. I am confused about whether I am lowering the ropinrole too quickly as Dr F says once I have established good control I could have a slow reduction of Rop by 0.25mg every two weeks. Maybe I need to keep the 0.75mg daily dose for the time being and up the Buprenorphine until the symptoms have stopped. He says that during that reduction I may need to have a slight increase in Bup but that it should not exceed 1.2mg per 24 hours.

Apologies for the length of this post but I would welcome any help or advice - I understand if it's all too confusing and I get no response. Thank you so much if you have read this far!

[SueJohnson]

You haven't reduced the ropinirole too fast as you have only reduced by .25 mg but follow his schedule and don't reduce any faster than .25 mg every 2 weeks. I will let others advise on the buprenorphine although the average effective dose once you are off ropinirole is .5 to 6 mg according to the Mayo Algorithm.

[Faith_Hope_1 in reply to SueJohnson]

Thank you, Sue 🙏

[Joolsg]

Buprenorphine cannot stop ALL withdrawal symptoms. So change your mind set and accept that getting off Ropinirole WILL cause severe RLS.I don't think you should take above 0.8mg Buprenorphine until you're completely off all Ropinirole.

I tell people to drop 0.25mg Ropinirole every 2 weeks and add 0.1mg Buprenorphine. So by the time you are at 0.5mg Ropinirole you would be on 0.2mg Buprenorphine. By the time you're on 0.25mg Ropinirole you are on 0.3mg Buprenorphine.

When you stop Ropinirole completely you will be on 0.4mg Buprenorphine and THEN the withdrawals will kick in BIG time.

At that stage you can add 0.2mg a night up to 0.8mg and try to stay at that dose for the next 2 weeks.

Most UK patients do very well on BELOW 0.8mg so it's best to keep the dose low until you're through Ropinirole withdrawal and your dopamine receptors are settling.

It's better to have a rough few weeks of withdrawal and be able to manage on a dose under 1mg going forward.

[Faith_Hope_1 in reply to Joolsg]

Thank you, Jools - from what you say the directions Dr Fackrell gave me to follow are obviously not the best ones. I did naively think I could escape the horrendous withdrawal symptoms by titrating the Buprenorphine whilst tapering the ropinirole but it appears there’s no escape! Are you saying that I should end up only needing to take a dose of under 1mg Bup ? I’m a little confused by your last paragraph - sorry. Thank you so much for your helpful information- greatly appreciated.

[Joolsg in reply to Faith_Hope_1]

Yes. Many of us on here have zero RLS on 0.4 -0.8mg.We had all been off DAs before we started. There are only one or two who have used Buprenorphine to get off Ropinirole or Pramipexole.

So it's best to try to keep the Buprenorphine to the lowest effective dose.

However, if you really can't cope with the withdrawals then do slightly increase the Buprenorphine.

But remember your brain has spent a long time relying on its dopamine hit from Ropinirole. So any reduction/stopping will cause your dopamine receptors to scream out for a dopamine hit. That's what causes the severe RLS.

So you may end up taking more Buprenorphine than you need because your brain will settle around a month after the last Ropinirole dose.

It's difficult because we all know how horrendous Ropinirole withdrawal is.

You could possibly try slowly reducing Buprenorphine around a month after you get off Ropinirole to see if you can manage on a lower dose.

[Ticki]

i’ve been on that medication for about three years or so now and in the beginning I also finished the DA medication, but my doctor had me stop mine immediately called cold turkey and start the Buprenorphine and it was rough as I started at .2 I ended up I think it took about two months and I have to take .8 the highest dose but that’s what worked for me and seem to be doing pretty well. It’s just getting rid of that old medication and then hopefully you will be fine 💜

[Faith_Hope_1 in reply to Ticki]

Thank you 🙏 I’m hoping so but it’s a confusing process!

[Ticki in reply to Faith_Hope_1]

True.💜

[Huntingleroy]

Hi , like Jools Id done my withdrawing from Ropinirole (which was brutal ) before I commenced on 0.4 Bup tab and that worked for me from day 2 with pretty much zero Rls . Im still on that dose after 6 months . I had Gabapentin to help with withdrawing but not convinced it helped much . Sorry , it will get worse before it gets better but hang in there , best thing you will ever do ! Has your Gp agreed to prescribe Bup for you ? Keep strong and good luck !