Buprenorphine update - one week in

[Claire_1c]

Well, I’ve been taking Buprenorphine for a week now, and I can barely believe it.

I have had zero RLS!

My IRLSS has gone from the high 30s to 0. Absolutely no symptoms at all. I have spent my nights in bed like a normal person. The relief is unbelievable.

On the first night I took one 0.2mg sublingual tablet at 9pm and a second at midnight, this being the starting dose instructed by Dr Fackrell. No RLS but nausea and vomiting the next day. Nothing I couldn’t deal with - I took 0.3ml medical cannabis oil at bedtime as advised by Jools, and this must have reduced the severity.

On subsequent nights I’ve taken just one 0.2mg tablet at around 9.30pm. Again, no RLS and almost no nausea.

I’m guessing I may need to increase the dose over the next few months, but either way it looks as though a very low dose will be enough.

I know everyone’s experience of Buprenorphine is different, and people who need higher doses will undoubtedly have to deal with more side effects, but I couldn’t have wished for a better outcome. Seven consecutive nights with zero symptoms is something I’ve haven’t experienced since that distant time before I augmented on Ropinirole.

I’d been really worried I would react badly, especially as I’d tried Targinact in January and felt like I’d been poisoned. How strange that my sleep consultant is licensed to prescribe Oxycodone but recoiled in horror when I mentioned Buprenorphine.

Yet here I am, feeling human for the first time in years. It’s impossible to express how grateful I am to Jools, Sue, Chris and everyone else on this forum who has shared their knowledge and experience so generously. Without you all I’d still be pacing the house, contemplating suicide...

Even with all this support, it still taken me months of detective work and dogged determination to get my hands on the actual prescription.

So if you are struggling with your GP as I was, move to another practice if at all possible. Go and see Dr Robin Fackrell in Bath, or one of the few other consultants willing to prescribe opioids (Jools has a list).

It’s an uphill struggle but it can be done!

[Madlegs1]

Delighted for you!💚

[SueJohnson]

That's great! So pleased for you.

[707twitcher]

Welcome to the "Buprenorphine Gave Me My Life Back" club!!

[Retiredlady in reply to 707twitcher]

I’m a member of that club too now.

Been on only .2mg Buprenorphine for 2 weeks and no RLS….IT IS A MIRACLE!

Would be very interested in finding out the number of members of this forum who r also having success with Buprenorphine.Everyone needs to knows about this….it will change a lot of lives!

[Claire_1c in reply to Retiredlady]

So happy for you! 💫🫶🏼

[Joolsg]

So delighted for you. Now to fight the UK medical Profession to make them see the light & end the nightly torture so many are experiencing.

[nick-the-turk in reply to Joolsg]

agree jools we in the UK seem to be the last on the list for meds against the fight of RLS

[Oscarcat63 in reply to nick-the-turk]

Australia is worse ! 😏You literally have to become a heroin addict first, then you can get buprenophine from the drug and alcohol services. (The STIGMA !)

[LanaCSR in reply to Oscarcat63]

And I cannot find a doctor in South Carolina who will prescribe buprenorphine to save my life!! I am about to run out and no one will help me! Does anyone know of a doctor in South Carolina who prescribes buprenorphine? I would be externally grateful.

[Oscarcat63 in reply to LanaCSR]

Sue might have an idea..I wish I could help, but as I said I am in Australia. The whole thing is a s@#t show worldwide as far as I can tell.

[Claire_1c in reply to LanaCSR]

Yes, SueJohnson is the holder of the list of helpful doctor all over the world. I hope she can recommend someone not too far from you. Must be awful to be in your situation. Having just started taking it, I'm already worried about shortages etc.

I admit I was a bit naughty and told my doctor I needed a higher dose than I actually do. That way I can squirrel away a small stockpile in case of emergencies.

Good luck!

Claire

[amrob123 in reply to Oscarcat63]

That's only if you want Subutex. Buprenorphine as Temgesic an be prescribed by GPS/specialists. Looking at the ingredients list for both Subutex and Temgesic, I don't see a difference between the two.

[Oscarcat63 in reply to amrob123]

Well, you are right... technically nothing stops a gp from prescribing opioids... they just do not like to do it. Forms, justifications etc. One of the main problems that I have encountered is that nowadays there is littke time to actually spend with your doctor to actually talk.. most of the ones with empathy are getting close to retirement age. The younger ones, who seem to join very large practices, really don't have time and they are taught, to be completely blunt - if tests are 'normal' and they can't actually 'see' the problem, it is antidepressants and paracetamol + 'lose weight', 'exercise' or 'it's just menopause' (because you're a woman), while you wait months to see a psychologist - who will do 6 sessions of CBT, whilst secretly diagnosing you with a personality disorder !

[Retiredlady in reply to Oscarcat63]

I live in Melbourne, Australia.If u would like to message me I will give u my sleep specialists details who understands how debilitating RLS is and will prescribe opoids.

[Oscarcat63 in reply to Retiredlady]

Messaged you 🙂

[LotteM]

Great news. Thanks for sharing. Now give yourself some time recover.

[Jumpey]

Absolutely delighted for you! And well done for your strength and persistence.

[Munroist]

Thank you for sharing. Because so many people have difficulty getting access to to buprenorphine can I ask about how the prescription works? Did you get a prescription from Dr Fackrell directly or did he recommend it and then your GP write the prescription? Did you get any push back from the Pharmacy or any difficulty finding a Pharmacy to fulfil the prescription?

[Claire_1c in reply to Munroist]

Excellent questions! I had the same ones myself. What I discovered is that a private prescription for a controlled drug such as Buprenorphine won’t be accepted by pharmacies. I even rang a hospital pharmacy and they also said no.

Only official NHS scripts will be filled, so Dr Fackrell wrote to my GP (my new GP in a faraway place that is - the local one has opioids red-listed), and she was happy to issue a prescription based on that.

Even then I found it hard to locate a pharmacy that could help. I trawled through half of London before finding a handful of pharmacies that were fine with it. They don't keep it in stock, so it always has to be ordered in. You need to give a day’s notice, and as long as there are no supply chain issues (which there are currently), it should all be fine.

So a lot of hoops to jump through and a lot of points at which the whole thing could fall apart. Hearing from Jools and the others who’ve managed to get prescriptions, it’s a monthly challenge to obtain the tablets. But if you can get your GP on board, the rest is dealable with.

[Munroist in reply to Claire_1c]

Thank you, that’s really helpful if a bit frustrating for anyone looking to go down that route. Well done for persevering.

[Claire_1c in reply to Munroist]

Frustrating is an understatement! 😂

[Drls]

that’s amazing Claire - I remember replying to you when you were trying to access buprenorphine - I am beginning to wonder if there is something more complex going on with me because I just don’t get that level of relief from buprenorphine ….. maybe I need to be looking at the situation a bit differently for me ….. anyway I’m so pleased for you - you can go on and live your life now 😀

[Claire_1c in reply to Drls]

Hi Dawn, thank you! I know you’ve posted about this. Can you remind me what dose you’re taking? Does the RLS break through during the night? Maybe you need to increase the dose? I’m thinking that Joolsg is the person to advise you here.

I hope I can go on and live my life now. Part of me is convinced this is just a blip and the symptoms will return.

[Drls in reply to Claire_1c]

Hi Claire I take two 0.4 tablets plus 150 mg pregabalin - I spread all the doses throughout the night - once the rls has subsided I am woken after 1.5 to 2 hours with usually one of my legs physically kicking ….which I think not everyone has.

I did increase my dose to 1-1.2 but the side effects were awful so I brought it down again…

I had a sleep study in February which I haven’t had the results of yet - my next neurologist appointment is 31st July so I suspect it will be given to me then …. That should spread some light on what’s actually going in with my body….. and maybe result in some helpful suggestions

[Claire_1c in reply to Drls]

That’s such a short period of relief. I’m so sorry you still haven’t cracked it. As you say, hopefully the sleep study will shed some light on it all. Not too long to wait at least. Treating RLS seems to involve mostly waiting! Let us know how it goes. x

[Joolsg in reply to Drls]

Like Claire,I have zero RLS on 0.4mg Buprenorphine.

The average dose is 1-1.5 mg, so you are on a VERY low dose.

If you don't get 24/7 relief, it probably means the dose is too low.

Dr Winkelman's opioid register makes it clear that most people need an upwards adjustment in the first year.

So, ask your doctor to increase the dose. You can add 0.2mg a night until it covers all symptoms.

Depending on when you get RLS, you can split the dose to get most cover when you need it. I used to get breakthrough RLS between 7 and 9 pm. So clearly the dose was wearing off after around 19/20 hours. I split the dose and this covered the breakthrough.

I take 0.2mg at 9 pm and 0.2mg at midnight.

[Drls in reply to Joolsg]

Hi Jools I did increase my dose of buprenorphine however I had severe side effects - the most worrying being difficulty swallowing - so I lowered the dose again. Since then I have been in a dilemma as to what to do - I’ve got an online consultation next week with prof Toby Richard’s of the iron clinic to arrange an iron infusion, I’m hoping that an iron infusion will put things a little more under control and give me some relief, so I can decide what medication is best for me .

[Joolsg in reply to Drls]

That's so frustrating. To find something that works. But the side effects are intolerable.

[Drls in reply to Joolsg]

Yes so frustrating - im also waiting fir the results of a sleep study I had in February so there may be some sleep apnea in the mix which if treated might help so I’m ever hopeful in finding a combination of things that allows me to sleep for more than two hours….

[Nightwalker999 in reply to Drls]

Hi there, I'm on Methadone 10ml X daily. It helps with the awful restlessness needing to walk but the needles and pins continue 24 hrs. Less when upright and walking. I can cope with it as it is but would love to be able to relax completely. I have to stay away from anything with sugar that has more than 3%. So a restricted diet. Good luck with finding a diet or meds that reduce this dreadful and debitating condition we all endure. X

[Drls]

ha yes! I’ve been waiting for something to work since 2020 so fingers crossed x

[Ticki]

that is wonderful news. I too use that medication and got my life back three years ago.💜

[Huntingleroy]

Ah wow Dr Fackrell prescribed Buprenorphine thats amazing news . Ive seen him a couple of times years ago . How are you going to get your future prescriptions ? Has your Gp agreed ? I think Ive found a Gp today who will so Ive just registered with him Fingers and everything crossed ! Its amazing isnt it to be Rls free , its like a miracle! Good luck . I get a little nausea and constipation but can live with that !

[Claire_1c in reply to Huntingleroy]

Yes, my GP agreed. But like you I had to work hard to find a practice that would prescribe Buprenorphine. I’m so so glad you’ve found a solution. I kept thinking of you with your dwindling supply of tablets, and it felt so unbelievably unfair. I really hope this new GP will work with Dr Martin so that you can get on with your life. Keep us posted!