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Starting Buprenorphine and tapering Ropinirole

Faith_Hope_1 profile image
34 Replies

Hi again,

I am about to collect my Buprenorphine from the pharmacy and I’m feeling really anxious about taking it having read the dreadful possible side effects, one of which is palpitations. I have Atrial Fibrillation and so don’t want it to cause episodes of that. I have been given different suggestions about taking it - Dr Fackrell said to take it and slowly taper the ropinirole, taking them alongside each other. If I suffer from nausea then to stop taking them for a time and take the anti nausea medication. However, my GP has told me to take the anti nausea medication alongside the buprenorphine from the outset and to slowly taper the ropinirole. Does anybody have any advice that would be helpful at this critical time? I don’t want to mess up tapering the Ropinirole by going too quickly/slowly - and I don’t want to mess up the effectiveness of Buprenorphine if I get it wrong. Really grateful for any advice and many thanks in advance.

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Faith_Hope_1
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34 Replies
Joolsg profile image
Joolsg

What dose of Ropinirole are you on now? What dose of Buprenorphine pills have you been given?Definitely take the nausea pills straight away if nausea hits. Hopefully you have a SAFE anti nausea? Zofran or Kwells?

Whatever you do, you MUST reduce Ropinirole.

I know of 2 people who started Buprenorphine while still on Ropinirole or Pramipexole. It worked straight away. But they then assumed they could stay on the Ropinirole/Pramipexole. Of course augmentation broke through a few weeks/months later but they were on a high dose of Buprenorphine. So they had to go through brutal withdrawal.

So reduce by 0.25mg normal release Ropinirole. Normally we say drop a dose every 2 weeks. But as you have Buprenorphine, drop 0.25mg every week.

As you drop 0.25mg Ropinirole, add 0.1mg Buprenorphine pills. Get a pill cutter.

Also buy some cetirizine anti histamines in case you get sweats.

Atrial fibrillation- keep a close eye on it. Sleep will help, so controlling severe RLS with Buprenorphine will enable sleep.

Buprenorphine can cause racing heart but if you increase by 0.1mg a week, you should adjust quickly.

SueJohnson profile image
SueJohnson

I agree with Joolsg. Start with a very small dose and see how it affects you before increasing it. Besides the affect on your heart beat be careful when you stand up as it may cause orthostatic hypotension.

What anti nausea medicine will you be taking as some can make RLS worse?

Faith_Hope_1 profile image
Faith_Hope_1

Dear Jools and Sue, Thank you so much for the swift responses. I have been given Metolopramide which I think is one that will not be a good one to use for this. Dr Fackrell recommended me to take 0.2mg Buprenorphine one hour before going to bed, then take a further 0.2mg if it doesn't reduce symptoms. I can then take a further 0.4mg of Bup in divided does to a maximum of 0.8mg over 24 hours. I know that the lowest dose that works is the one to stick to. He suggests a slow reduction of Rop by 0.25 every two weeks or so until it is entirely removed. During this reduction he says that I may require a slight increase in Bup to mitigate the reduction but the dose should not exceed 1.2mg in 24hrs. He is going to follow up in six months if necessary.

I have been reading on other posts about the anxiety/depression/insomnia caused by Bup and that has caused me to feel concerned about taking it. At the moment I am taking 1.5mg of Rop and it is helping to keep it at bay most of the time. Since that is quite a low dose I am tempted to continue with that rather than be sunk into anxiety and depression and insomnia on top of the anxiety I am also feeling about the radiculopathy for which I am awaiting a brain and spinal MRI. It's all so complicated.

Joolsg profile image
Joolsg in reply toFaith_Hope_1

Metolopramide is one of the bad trigger meds! See, even the apparent top UK doctors have a lot to learn still!!Get zofran or medical cannabis. Medical cannabis with 20% THC stopped all my nausea within a day.

Depression does NOT happen for everyone on Buprenorphine. I didn't suffer any. I did get panic attacks but they quickly disappeared with 50mg pregabalin. I've now reduced to 6mg pregabalin and have no insomnia or panic.

Buprenorphine works at very low dose. Most of us do well on under 0.8mg so start low and stay low.

Only increase by 0.1mg and if withdrawal symptoms are minimal, you can reduce completely within 6 to 8 weeks.

Aim for 0.6mg Buprenorphine and try to stay on that until 2 weeks after your last dose of Ropinirole. Then you can increase slowly to 0.8mg.

I'll bet it covers your RLS.

If you experience Depression or low mood or insomnia, you could try Vortioxetine.

Claire has posted that it works with her Buprenorphine and she thinks it has helped her avoid Buprenorphine depression.

Faith_Hope_1 profile image
Faith_Hope_1 in reply toJoolsg

Thank you so much for this detailed reply - very helpful. I don't think I can get medical cannabis. How do you manage to get it? Is it prescribed?

Joolsg profile image
Joolsg in reply toFaith_Hope_1

In UK you use online private medical cannabis clinics. You have to pay. Initial consultation costs £45. Then cannabis oil with 20% THC costs about £3 a day. You would only need a month's supply until you adjust to Buprenorphine.

Faith_Hope_1 profile image
Faith_Hope_1 in reply toJoolsg

Is Releaf the kind of thing you mean? Or can you direct me to a good place to apply? Many, many thanks 🙏

Joolsg profile image
Joolsg in reply toFaith_Hope_1

alternaleaf.co.uk/consultsJust google medical cannabis clinics. There were only 2 when I used medical cannabis. Now there are quite a few.

I originally used Project 21 but that has now disappeared. More recently I used curaleaf clinic.

All seem to charge similar amounts.

Faith_Hope_1 profile image
Faith_Hope_1 in reply toJoolsg

Thank you 🙏

Joolsg profile image
Joolsg in reply toFaith_Hope_1

I used cannabis oil with 20% THC. Sedating oil.They may suggest sedating flower bud to vape. That gives instant relief. The oil takes 1.5- 2 hours to 'kick in'.

Flower bud works out more expensive because you have to buy a cannabis grinder and a vaping tower to cool down the smoke.

SueJohnson profile image
SueJohnson in reply toFaith_Hope_1

No,No, No - you do not want to stick with ropinirole !!! There are solutions for the side effects of buprenorphine.

davchar23 profile image
davchar23 in reply toFaith_Hope_1

The problem with taking a whole 200mcg tablet at one go, was for me, that it exceeded the nausea level. I recommend staggering of any dose carefully.

Davchar

Faith_Hope_1 profile image
Faith_Hope_1 in reply todavchar23

What is the nausea level?

davchar23 profile image
davchar23 in reply toFaith_Hope_1

Sorry that is difficult to explain! Basically it is the level of concentration of bupre in the blood at which nausea trips in and my GP explained this with a graph but more simply as Twitcher said bupre takes 30-40 minutes to be effective and the concentration boosts quickly with a tablet whilst a patch maintains a constant level about 12 hours after application and the "knack" is to use at a level enough to control RLS but not exceed the nausea level of concentration. That is not easy to find and I suspect varies significantly person to person.

Best regards

Davchar

Faith_Hope_1 profile image
Faith_Hope_1

Also, I do take Lorazapam on a very occasional basis when the anxiety threatens to cause an episode of Afib. Is it okay to take Lorazepam with Bup?

Joolsg profile image
Joolsg in reply toFaith_Hope_1

In small amounts, occasionally. All benzos taken with opioids can increase respiratory depression, so monitor and tell your GP and Dr Fackrell. Also tell Dr Fackrell that metolopromide is listed as an RLS trigger on RLS-UK website.

Faith_Hope_1 profile image
Faith_Hope_1 in reply toJoolsg

Dr Fackrell told my GP to prescribe an anti sickness drug but didn't say which one. It was my GP who prescribed Metolopramide. I am now waiting for a new prescription for Zofran before starting to take the Bup. I could let him know that my GP prescribed the Met so that he knows he needs to advise which ones to prescribe..

Joolsg profile image
Joolsg in reply toFaith_Hope_1

👍

707twitcher profile image
707twitcher

my advice is not to worry about side effects of buprenorphine just yet. It will be hard to distinguish those from DAWS symptoms anyway.

I was on Pramipexole for 12 years. I was able to wean off it fairly fast - over three weeks, from a dosage of .5mg, thanks to buprenorphine. This is faster than recommended, but I took it easy, making sure each reduction went smoothly before going further. Your doctor’s advice about dosage for the buprenorphine sounds right. The buprenorphine acts quickly (30 minutes or so), so you can take more until you get relief. For me, like Joolsg and others, I was able to completely relieve the RLS symptoms from night one with buprenorphine.

If you don’t already do it, start a daily log to keep track of your dosage, symptoms, other meds, diet, etc. This will help you find triggers and spot trends.

Faith_Hope_1 profile image
Faith_Hope_1 in reply to707twitcher

Thank you so much 🙏

Faith_Hope_1 profile image
Faith_Hope_1 in reply to707twitcher

Has the anxiety/depression/insomnia been an issue for you?

707twitcher profile image
707twitcher in reply toFaith_Hope_1

No. For me, after the first couple months when depression was more noticeable (I suspect from DAWS primarily), it’s been constipation, fatigue (seems to come and go), hot flashes, loss of appetite. I use cannabis to help with the insomnia (also helps nausea)..

Faith_Hope_1 profile image
Faith_Hope_1 in reply to707twitcher

Thank you 🙏

LotteM profile image
LotteM

I am also on buprenorphine and have been for well over 3 years now. It worked well from day 1, and for me nausea or any other side effects has never been an issue. Side effects are not a given. You seem well advised and well prepared by your doctor. And of course by the posts and replies here. So, don’t worry for things that may not happen. Just start and see.

ziggypiggy profile image
ziggypiggy in reply toLotteM

Agreed. We are all different. No need to manifest any side effects in advance. Also, don't attach potential withdrawal symptoms from the old med to the new one. Give yourself a grace period to adjust before coming to conclusions.

Faith_Hope_1 profile image
Faith_Hope_1 in reply toLotteM

Thank you 🙏

Faith_Hope_1 profile image
Faith_Hope_1 in reply toLotteM

Thank you 🙏

davchar23 profile image
davchar23

Dear Madame,

I hope my experience of low dose buprenorphine (both tablets and patches) will assure you to proceed immediately. After augmentation on Ropinirole my GP tried several remedies before i eventually got onto buprenorphine ("bupre") and achieved my life back again. Before I talk about my experience with bupre side effects I first need to say that I was completely off ropinirole before starting bupre.

My GP tried several drugs to try alleviate augmentation including pregabalin, gabapentin and oxycodone before he started me on bupre at one 15mcg/hr weekly patch i experienced the 3 of the major side effects ie constipation (controlled with appropriate laxatives), nausea, and hot/cold sweats. i did not experience insomnia or atrial fibrillation.

For nausea control my GP tried several anti nausea medicines including cetirizine, cyclizine, and Ondansetron...all failed to improve the daily morning nausea. i also tried cannabis oil which helped Joolsg but not me.

I believe that the only way (at least for me) to control the nausea and sweating is to think carefully about the "half life " of bupre or in plain terminology how long is the drug effective and at what level (ie concentration) in the blood. I have done a lot of experimentation on this (helped a lot by fellow forum contributors such as 707Twitcher). I have for the present succeeded in significantly reducing both nausea and sweats by "staggereing " two patches by about 2 days 9they last 5 or 6 days only).

To control my RLS i need between 15- 20mcg/hr so I use a 15mcg/hr patch cut into two (ie 7.5mcg/hr each) and then every 1 or 2 nights a week at bedtime i top up with 100mcg of tablet (ie half a standard 200mcg tablet)

Whilst the end result , which took a long time to establish, is not all that scientific it seems to be effective. the key is to key the level of bupre below the starting level causing nausea.

I hope this information helps you understand the side effects problem a little better?

Good luck and please let me know if you need any further information

Davchar

Faith_Hope_1 profile image
Faith_Hope_1 in reply todavchar23

Thank you so much for taking the time to respond in such detail. Very much appreciated 🙏

Gonzo123 profile image
Gonzo123

You are so lucky to get on Buprenorphine. Dr Fackrell sent a letter to my GP but they will not presribe it. I am having trouble with my GP and have done what Jools suggested but without luck at the moment. I have taken Buprenorphine for the last three days because Dr Fackrell gave me a private prescription for two weeks and it is a miracle. For the first time in fifteen years I have been free of RLS . Anyone else able to help me get it prescribed on the NHS.

Gonzo123 profile image
Gonzo123 in reply toGonzo123

200 microgram

Claire_lc profile image
Claire_lc in reply toGonzo123

Where do you live? If you can't find a GP practice within an hour of home then you could ask Dr Fackrell if he would issue private prescriptions, maybe on a 3-monthly basis (one a month, dated accordingly).

I recently spoke to Prof Guy Leschziner about this as I was worried my GP might have a change of heart and stop prescribing. He told me that he would issue private prescriptions for me if ever that was the case.

I know it makes it more expensive, but the relief Buprenorphine provides is worth any sacrifice!

Gonzo123 profile image
Gonzo123 in reply toClaire_lc

I live in Cardiff. I have e mailed Dr Fackrell

Faith_Hope_1 profile image
Faith_Hope_1

I'm so sorry to hear that your GP won't prescribe it and realise how lucky I am with my GP - he is very supportive and keen to help me. What dose are you taking? Have you had any nausea. I am due to start mine this evening and I'm anxious about it for some unknown reason. I'll be tapering the Ropinirole that I have been having to increase almost weekly of late and I think I'm concerned about getting the tapering right and not messing up the effect of the Bup. It's great to hear that it works so well for you and I do hope that you manage to find a way of gaining access to it - it's cruel to be denied it.

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