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Restless Legs Syndrome

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Buprenorphine

Cookiebum24 profile image
14 Replies

Hello, have many UK people found it easy or hard to get Buprenorphine px by GP to control pain from RLS?

I have been withdrawing from Pramepexole and using only codeine however it is now not effective in controlling my pain. I have a GP appointment in a few days and was going to ask for Buprenorphine.

Also, should I ask for tablets or patches?

Thanks in advance.

Nicola

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Cookiebum24
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14 Replies
Joolsg profile image
Joolsg

It very much depends on 2 things.1. Is Buprenorphine red listed in your prescribing area.

2. Is your GP surgery anti opioids?

I take Buprenorphine pills at night. I do well on 0.4mg, but need to increase it to 0.5/0.6 for different brands.

Pills usually work better because they release most of the active ingredients over the first 12 hours, so if you take around 9/10 at night, they cover all night.

The patches release an even amount over 24 hours and most people report that they stop working after 4 days. They're supposed to last 7. So you then get severe RLS for the next 3 days. Too many people report this for it to be dismissed.

Here is the research study from the USA.

Hopefully your GP will read it.

neurologyadvisor.com/report...

Huntingleroy profile image
Huntingleroy in reply to Joolsg

Hi i know Buprenorphine is red listed at my Gps so does this mean its a post code lottery which is crazy . I have found a private gp here who will.prescribe it but is waiting for me to see Neurologist first !! If I do succeed do I have to come off Gabapentin and Targinact straight away or wean off them both slowly?

Joolsg profile image
Joolsg in reply to Huntingleroy

Yes, the ridiculous UK postcode lottery.You can switch straight to Buprenorphine pills from Targinact as you're swapping from one opioid to another. BUT you must reduce gabapentin slowly to avoid withdrawal symptoms. Check with the private GP where you can fill the prescription because sometimes, local pharmacies will not fill a private prescription.

It is just outrageous that some patients can get Buprenorphine, but not others.

TheDoDahMan profile image
TheDoDahMan in reply to Joolsg

Agree, 100%.

RiversW profile image
RiversW

Hello Cookie,

I will try to relay my experience with Buprenorphine but only in so much as it relates to the patch. In Brasil we do not have access to the tablets.

I use a 7 day 20mg patch of Buprenorphine and it has been a game changer. Most of the time it eliminates my RLS and I sleep like I haven't in 30 years. The only issue for me is that the patch is only effective for me for 4 days. Fortunately my neurologist allowed me to change every 5 days. On the fifth night I experience RLS symptoms for one night, sometimes two. For me the symptoms are not severe on the fifth night. Typically, I am up for 30 minutes to an hour and then I am able to go back to sleep. This is a huge improvement over what my bad nights used to be like. My full on symptoms can be quite severe.

In any case, this medication has changed my life. One would seem to have more flexibility with the tablet but but that is not an option for me.

Good luck to you and I hope Buprenorphine helps. Rivers

Claire_lc profile image
Claire_lc

Hi Nicola,

Well done for getting of Pramipexole. No mean feat!

You’ll find a lot of posts here about GPs in the UK and their attitude towards prescribing Buprenorphine and other opioids. Essentially it’s a postcode lottery. Some will entertain it, others have it ‘red-listed’ and won’t prescribe under any circumstances. You can check the status in your borough by going onto the online drug formulary for your area. You type in a drug name and you’ll see whether it’s restricted or not.

I’m in North London and it’s strictly red-listed here, however I think I’ve found a workaround, which I am going to post about separately, once I know it works.

Either way you will likely need a neurologist’s letter, confirming you have refractory RLS and recommending low-dose opioids. Joolsg knows far more than I do about all this, so I’m sure she’ll correct me if any of this is wrong, and give you any other guidance to help you on your way. Good luck with it.

Cookiebum24 profile image
Cookiebum24 in reply to Claire_lc

Thank you that was very helpful, it’s down as restricted in my area.

I’m not completely off the Pramipexole yet….I've gone from 3 tablets a day to just half a tablet a day but fear (and pain) has stopped me progressing any further.

It’s taken me 4 weeks to get a GP appointment and until I get stronger analgesia I won’t stop the pramipexole.

707twitcher profile image
707twitcher

my advice would be to ask for the pills. As Joolsg said, they are far more flexible. If you start off with, say, a .2mg pill and that doesn’t give you relief within an hour, you can take another. They generally are fully effective within an hour.

The only reason, for me anyway, to consider the patch is to try to minimize adverse side effects. In my experience, the patch can be effective at a lower dose level so that you have a little less of the drug in your system if that lessens side effects for you. But the drawbacks of the patch - losing effectiveness before the 7 days are up, reactions on the skin, the hassle of trying to keep it somewhat dry when bathing, etc - usually make the pills the best choice.

Simkin profile image
Simkin

My GP in the UK was happy to prescribe buprenorphine tablets.

rls-insomniac profile image
rls-insomniac

Initially when I asked my gp to trial buprenophine, he flatly refused and said it was prescribed for those who were trying to withdraw from class A drugs. Once I persuaded my consultant to trial it, he then wrote a letter to my gp. My gp practice was okay with that and started to prescribe it for me. I have to make a monthly request for it as they refused to give buprenorphine on a repeat prescription basis. I'm in the UK btw.

Cookiebum24 profile image
Cookiebum24 in reply to rls-insomniac

I’m a manager of a nursing home and I’ve a couple of residents who have the patches for pain control so I will throw that at my GP.

If it’s suitable for a 90 yr old then it’s suitable for me!

Renaul profile image
Renaul

I had no trouble getting buprenorphine sub lingual tabs prescribed. And my GP was happy to keep increasing the dose until I found the level to suit me.

I live in South Manchester area

Floordefleur profile image
Floordefleur

I take one forth of a 2 mg tablet. It's very low dose, but works for me.

Cookiebum24 profile image
Cookiebum24

so my GP wouldn’t give me Buprenorphine despite my pleas and the evidence that it’s the recommended drug.

She gave me 10mg Zomorph instead and convinced herself it was the same strength to buprenorphine that I was requesting.

So yesterday in my quest to finally stop Pramipexole for good, I didn’t take any!

Took the Zomorph at 19.30…..by 21.00 my legs were off and the pain was unbearable. I managed around 3 hours sleep through the night on and off 😢😢

Has anyone had any success with Zomorph? I know I need to give it some time as stopping the dopamine will severely increase my withdrawal symptoms but I feel let down by my GP again.

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