Buprenorphine

[Loopylegs]

Hello Everyone, I haven't been here for a while, I thought I'd add a bit more info about my rls journey. I'm 51 now & have had rls since I was a child. After slowly coming off years of using the awful dopamine agonists, (pramipexole/ropinerole), thanks to the fantastic advice here, I'm now getting up to 8hrs sleep most nights. My rls has gone back to its usual annoying crawl when I sit down in the evening & to be honest I don't mind that, it rarely effects my sleep now, sometimes, I'll wake with just a little in my ankle and I get up move about for a bit and then back to bed and it will have subsided, a far cry from my years of crawling all over my arms, legs & shoulders and being so sleep deprived! My doctor couldn't prescribe buprenorphine for me even though she wrote me a prescription because in Ireland a consultant has to put you on the drug first & advise the doctor to continue the prescriptions. I found it hard to get a neurologist in Ireland to take me on, so found one in Belfast who couldn't cross border prescribe buprenorphine, then I finally was accepted by a neurologist in Dublin, she was so expensive & I was told there's a good chance she won't prescribe buprenorphine for me, in the meantime ( and to cut a long story short) I was with a pain management consultant in Dublin because I have to have a hip replacement, and I told him my predicament with the rls & buprenorphine, and guess what, he prescribed the buprenorphine patch! The lowest dose, it's been a game changer, the patch lasts 7 days, I just take 200mg of gabapentin at night and for the past few months have had very little rls, it is mild now, comes & goes, if I have a night where its in my legs and disturbing my sleep I add some oestrogen gel & that helps, as I'm menopausal, I think the lack of oestrogen is having an effect on my rls too, even though studies say hrt make it worse, I haven't found that at all. They say rls is worse in pregnancy and experts blame hormones, but my rls was awful during pregnancy until I started supplementing iron and it completely disappeared, so I'm guessing the baby was depleting my iron stores. I hope everyone is keeping well and finding relief for this awful disease.

[Madlegs1]

That's great news , altogether!

Would you be able to share the name of the pain consultant? As it might be of some help to others.

Thank you.

[Loopylegs in reply to Madlegs1]

Dr Philip Hu, in the sports clinic in Santry, Dublin

[Madlegs1 in reply to Loopylegs]

Grand-- good to know.

That's where my partner got their new knees.!!👍💚😎

[Loopylegs in reply to Madlegs1]

I'll be heading there soon for a new hip! I hope your partner is doing well, I hear the knees are tough to recover from compared to the hip.

[Madlegs1 in reply to Loopylegs]

Getting on great!!

Main thing is to do the exercises!👍

Good luck.

[Loopylegs in reply to Madlegs1]

Absolutely

[SueJohnson]

That's great! So pleased for you. It would be great if you could give me the name of the doctor in Belfast so I can add his/her name to my list of doctors.

Also since I am unfamiliar with Ireland and prescribing rules, when you said couldn't cross border in prescribing did that mean just between northern Ireland and the rest of Ireland or are there other borders within Ireland?

[Madlegs1 in reply to SueJohnson]

Northern Ireland is UK -- outside the EU. Although there is no physical border between the two countries, there is a huge chasm of difference in the legislations.🥴

So prescriptions wouldn't be recognised from each jurisdiction.

[Loopylegs in reply to Madlegs1]

I live near a border town and use the pharmacy there, they do dispense my prescription but not gabapentin or buprenorphine, just for antibiotics etc but my goodness the price difference in medications up north! We are completely ripped off down south for example co codamol 32 pack (solpadeine) £1.99 up north compared to €14.50 for a 24 pack down south!

[SueJohnson in reply to Madlegs1]

Thank you. I guess it is like the states in the US.

[Loopylegs in reply to SueJohnson]

Between northern Ireland & southern Ireland. Buprenorphine is a controlled drug in Ireland so I'd have to get it off a consultant in Southern Ireland. Dr Jamie Campbell in Kingsbridge private hospital Belfast, an lovely man, he couldn't give me the buprenorphine but gave me clonazepam to try & gave me a letter to get clonazepam from my GP, but the clonazepam didn't help, so only I was under a pain management consultant for my hip I wouldn't have the buprenorphine patches, Dr Hu was very helpful, he was familiar with RLS and really listened to me, he had no problem giving me the patches, he said the tablets were not available at the moment but the patches were, so I tried them and by the 2nd day my rls had almost disappeared, its like getting your life back, I have absolutely no side effects from the patch and it has no effects on my asthma either😊

[SueJohnson in reply to Loopylegs]

Thank you. And so glad you were able to get the patches from Dr. Hu.

[Madlegs1 in reply to Loopylegs]

That is so great.

Like my own story-- I'm with Power - pain consultant in Tallaght, who got me on opioids for back pain after spinal reconstruction, and continues it for RLS.

[Keith1231 in reply to Madlegs1]

Last July I had a fall and crushed my T10 vertibra, I was prescribed Meptazanol for the pain, but it had no effect on my RLS. I asked my GP for a small amount of Buprenorphine for my RLS but they refused as I was already taking an opioid for my back. Would both opioids act in the same way?

[Madlegs1 in reply to Keith1231]

Yes- most opioids would calm RLS. It might depend on the dose.

In my experience, short acting ones such as Oxynorm work best, but have the bother of constantly reminding oneself to take it!😝

Also I would check all possible triggers-- medication, food and drink.

[Loopylegs]

Just to add, the patch is a 7 day patch but I find it doesn't last 7 days for me, I would say 5 days to be honest but the rls symptoms do creep back but not severe, when the patch is changed on day 7 relief kicks in again for a good 5/6 days.

[LotteM in reply to Loopylegs]

Do discuss this with your pain doctor. If the pills become available again, he could prescribe you a set to add as needed (that is how I use it). Or up your dose a little, allowing you to add another patch the 6th day. I always keep the old patch on for a day or two, as I assume it still yields a little and adds to a smooth transition from the old to the new. Davchar is using a ‘tiled’ approach, have two patches on at the same time, but one replaced on day 1 and the other 4 days later. Something like that.

[Madlegs1 in reply to LotteM]

That's a great idea- about overlapping the patch times.

I used to cut up my Fentanyl patches into thirds, and put a new one on each day. (They are a 3 day patch)

[soupersuzy in reply to Loopylegs]

Would you say the patches are better than tablets.

[707twitcher]

Here's a couple charts showing the effectiveness of buprenorphine patches over time. The bottom one is easier to understand, showing a cycle over 3 weeks. It basically shows the peak effectiveness is at the 72 hour mark. Only about half effective at 24 hour mark. About 70% effective at day 6. This is why most people here change at the 5 or 6 day mark, and keep the old patch on for an extra night. Unfortunately that messes with the Rx - some pharmacies have difficulty filling a Rx that differs from manufacturer recommendations. The manufacturers have had this info available for at least 15+ years - they choose to ignore it in order to make the product look better.

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