Buprenorphine

[Biscuitface]

Hi I am on a Buprenorphine patch 52.5 dose. I'm coming off Gabapentin and have now stopped Ropinerole. I'm having anxiety attacks and sensations of being unable to breathe. I feel my Buprenorphine is too strong. It's Sunday today. I plan to try and speak to my gp in the morning if I can get an appointment. Can Joolsg or anyone please advise. ?

[LotteM]

That is an enormous dose! The 5mcg/h, thus less than 1/10th of what you are taking now is roughly equivalent to sublingual buprenorphine 0.2mg tablets (4x a day). Many people with rls need only 1-2 of these tablets, in the late afternoon or evening to suppress their symptoms.

I do think with you that you are on a far too high dose. I hope you haven't been on it long, because reducing the dose will most likely induce withdrawal symptoms and tapering down has to be done slowly.

Buprenorphine is nit a well k ow opioid, but a strong one. And usually used for opioid withdrawal or cancer pain; in those situations far higher doses are needed. But even then you dose seems on the very high end of the scale.

Please go back to your gp and let her/him inform himself about how to dose it properly. 5-15mcg/h dosing is more likely sufficient for rls symptoms.

[Biscuitface in reply to LotteM]

Thankyou LotteM. As I suspected. I started on this on 1/11/21. I shall try and speak with a gp in the morning and ask for it to be reduced.

[LotteM in reply to Biscuitface]

Please do! And - do the reduction not at once, but stepwise.

Madlegs can advise you better about this. He has experience (with fentanyl).

[Joolsg]

Can you check the dose. The Buprenorphine patch comes in 5,10 or 20 micrograms.I think you might mean the 5 microgram patch or 0.5mg. I hope you do. 52.5mg is off the scale high.

You should ask for Temgesic 0.2mg pills and start slowly with 0.2mg for 2 nights, see how it works and if you get break through RLS, take another 0.2mg. 0.4mg is the average nightly dose and you xan cut the pills in half to ensure you only take enough to cover RLS.

I developed anxiety and panuc attacks after 3 weeks on Buprenorphine but had pregabalin pills left over from when on other meds.

I took 25mg first night and 50mg yhe second night and it stopped the attacks.

You need to make sure your breathing isn't affected as opioids can cause respiratory depression in certain people.

If it's panic, pregabalin will help. If it's definitely respiratory depression, you will have to ask your GP for alternatives.

Also, how long did you take to reduce yhe gabapentin? And Ropinirole? Reducing either of these drugs too quickly can also cause severe anxiety and depression.

[Biscuitface in reply to Joolsg]

Hi Joolsg. 52.5mcg is dosage. I am still reducing Gabapentin. I've been off Ropinirole for 3 days having reduced over 3 weeks from 3 a day.

Medication

[Joolsg in reply to Biscuitface]

I think that's your problem. Much, much too high. That's over 10 times the dose I'm taking. No wonder you're having massive panic attacks.I can't believe your GP prescribed such a high dose!

Speak URGENTLY first thing and explain you've been given an overdose effectively and ask for Temgesic 0.2mg pills or Buprenorphine 0.4mg pills and start them instead. If you've been on the patch more than a few days, you MAY get withdrawal symptoms.

I'm stunned. That is really poor of your GP.

[LanaCSR in reply to Joolsg]

Are you sure about those strengths on the buprenorphine sublingual tabs? Because I am on them, and I am only aware of 2 mg and 4 mg, not 0.2 mg 0.4 mg.

[Joolsg in reply to LanaCSR]

Yes. According to the Massachussetts Opioid Study, the average dose for RLS is 0.4mg. And Dr. Buchfuhrer states many get full relief on 0.2mg, a tiny, tiny dose.Shumbah was on 1 or 2mg a day so some people may need higher doses.

0.2mg is only available as 'Temgesic' in the UK but generoc Buprenorphine comes in 0.4.mg or 0.8mg.

I cut the 0.4mg in half and take 0.2 at 10pm and 0.2mg just before sleep.

Photo

[LanaCSR in reply to Joolsg]

Shumba was on 2 mg because she takes the sublingual form and she got it from a dr in NY. It is my understanding she sometimes cuts it down to 1 mg. But in the US, buprenorphine sublingual is only available in 2 mg or 4 mg. And it is the only form that is affordable for a person who doesn't have health insurance, like me. Dr. B recommends a tiny dose, but you can only get that low dose from the patch which is completely unaffordable for those without health insurance. I think it is over a thousand dollars a month for the lower dose patch. The sublingual form costs me about $15 a month using GoodRX coupon.

[Joolsg in reply to LanaCSR]

That's an enormous difference in price. No idea why we can get 0.4mg sublingual here in the UK but it's not available in the US. It would explain why Shumbah started high.

[LanaCSR in reply to Joolsg]

I truly hate the Healthcare system in the US. I can't afford to buy health insurance to keep costs low, but I also can't afford the high costs of health care and prescriptions even with self-pay discount. It sounds like the UK has a much better system.

[Joolsg in reply to LanaCSR]

Most of Europe (and Canada) has excellent health care based on need not wealth. But we pay higher taxes and national insurance. I hope it continues here, but there are plans to bring in US style privatisation which would be terribly sad.

[LanaCSR in reply to Joolsg]

That would be sad. It should be the opposite. The US should switch over to UK and Canada system.

[Joolsg in reply to Biscuitface]

I've worked out that I'm on 400mcg over 24 hours, so around 16mcg an hour. You're on 52mcg an hour so actually about 3 times my dose.So to avoid any withdrawals, ask for either the lowest dose patch for 4 days, then switch to sublingual or switch straight to 0.8mg pills and then after 4 days see if you can reduce to 0.6mg.

The pills can be cut if you get Accord or Sandoz brands. Morningside brand are far too small to cut.

Hopefully, reducing the dose will stop the panic /anxiety.

J x

[Felicity21 in reply to Joolsg]

Hi Jools, I calculate 52.5 microgram (mcg) to be 0.0525 milligram (mg). Divide by 1000.

[LotteM in reply to Felicity21]

Felicity, the thing is these doses do not compare directly. Joolsg takes a sublingual tablet of 0.2 (0.4?)mg ONCE a day. Whereas the patch releases its dose (in Biscuitface's example of 0.005mg) per HOUR. And I don't think you can simply multiply by 24 to get comparable doses. The kinetics are different and definitely non-linear.

[Joolsg in reply to Felicity21]

Hi Felicity The 52.6mcg patch actually contains 30mg of Buprenorphine released over 96 hours. So it releases the mcg doseby the hour. So 30mg over 4 days is around 7.5mg a day.

I'm on 0.4mg a day.

It's way too high and is the dose for severe post op pain.

[Joolsg in reply to Felicity21]

Yes you're correct Felicity and my conversion of mg was incorrect. However, the patch releases that dosebof 52mcg per hour. I've worked out I'm on about 16mcg an hour so as a starting dose, it's 3 times higher than the average.

[ChickenTwisty in reply to Felicity21]

Hi Felicity. I agree with Lotte that the doses don't convert as you have suggested. I note that later in this trail you have made the same error. May it be of assistance here is an authoritive source on this conversion ... ww2.health.wa.gov.au/~/medi...

[67Waterman in reply to Joolsg]

Hi Joolsg .. please can I ask why one would want to come off Gabapentin and go on to Buprenorphine? I am only just reducing Ropinirole and going on to Gabapentin, so am confused. With many thanks Sally

[Joolsg in reply to 67Waterman]

Buprenorphine is for when everything else has failed. I withdrew from Ropinirole 5 years ago and was put on gabapentin and tramadol for 2 months. They had no effect on the withdrawal symptoms or my RLS. I then switched to 25mg Oxycontin and 150mg pregabalin. Again, they didn't cover my RLS and it stayed at 36/40 on the International severity scale. Prof. Chaudhuri told me there was nothing else and I had to live with it and 4 to 5 hours disturbed sleep was usual.I tried EVERYTHING. Resticted diets for 9/12 months, every supplement and device mentioned on here. Nothing worked. Then Shumbah posted about her results on Buprenorphine. I asked for them and met resistance but pushed and Prof. Chaudhuri eventually emailed to say he had no objections but my GP had to prescribe and take responsibility. She did! Instant, miraculous results. Buprenorphine affects the receptors in a slightly different way to other opioids and seems to help those who have failed all the other treatments.

So, I would always suggest pregabalin and gabapentin after Dopamine agonists. If the gabapentin works for you, brilliant.

[67Waterman in reply to Joolsg]

Dear Joolsg .. thank you so much for your swift response. I have had RLS since late teens (am now late 50's) but it started off slowly, with symptoms only really kicking in on planes or when I was ultra tired. By the time I was in my early 40's, it had worsened to every night. I Googled and found my wonder drug Ropinirole and have been on it ever since. But this year I have noticed, quite suddenly, that I am having to take more for it to be effective, and I started to get RLS all day, making it impossible to rest. So back to Mr Google where I started to read about augmentation. It is only through this forum that I have learnt about Gabapentin, so I have only just started on this (600g one dose 9.00pm) plus only half the night time dose of Ropinirole that I used to take (now 0.25mg). I have also now stopped the 0.25mg Ropinirole that I used to take during the day. My "shuffles" (we all have different words for our symptoms!) have gone during the day, but are still bad in the late evening in bed. I have taken on board the fact that Gabapentin takes a few weeks to kick in - so am keeping fingers crossed. With thanks again, Sally

[Joolsg in reply to 67Waterman]

Definitely sounds like augmentation on Ropinirole. I was on 4mg for over 10 years so augmentation hit very hard.Hopefully you'll manage to get off the last 0.25mg, try cutting it in half.

I hope the withdrawal isn't horrendous. The 14 days after the last dose are tough and many need an opioid and/or cannabis to cope.

Let us know how it goes.

[67Waterman in reply to Joolsg]

I loved my Ropinirole prior to augmentation - a life saver .... and as of yet I don't have faith in Gabapentin as I have only been on it a week, and I understand it takes time to kick in, and does not always work. Time will tell! Thank you again, Sally

[Joolsg in reply to 67Waterman]

I agree Sally. It was so wonderful for the first few years. When you read the science if augmentation, you see why it slowly turns on your body and augments ( increases) the symptoms of RLS until you can't sit still. I had it in my arms, back, and face and would happily have thrown myself out of the window. My GP had never heard of Augmentation or how bad withdrawal from Ropinirole could be so was absolutely no help.I've spent the last 5 years reading and researching and discovering how bad it is and how little the UK medical profession know.

It's going to become worse as more people augment and GPs flounder with zero knowledge.

Hopefully the gabapentin will help, but if it doesn't work after about 6 weeks ( and you're completely off Ropinirole) do ask for other meds. Wish I'd known that gabapentin and pregabalin don't work for many when they've augmented on dopaminergic meds.

[goosiegander in reply to Joolsg]

Hi Jules,

I listened to your radio broadcast a couple of months ago and it was a real eye opener for sure.

Bit of a long story. I am a nurse, medically retired sadly. However, I am working light dutues now to help out with Covid-19. Anyway, my RLS started as did yours. I was 27 and pregnant with my 2nd daughter. They assured me that it was just minor neurological idioces and they would go once my body had recovered after delivery. Of course, the feelings and urges to move just increased in severity.

I also was diagnosed with M.S. about 3 years later and everything was blamed on that. So, steroids etc were commenced but no improvement. Then I was involved in a road accident and suffered a serious head injury. That is when the opioids began. To be fair, once I was on a fairly high dose, the RLS (still undiagnosed) was much calmer. Then I suffered breakthrough symptoms, saw a neurologist, who diagnosed the RLS. Halleluiah! So I thought. She popped me on to Pramipexole and it worked. I have not suffered much breakthrough and am only 0.088mg but I want to get off now because it will be 12 years next month. I am hoping I will be able to do it but I am scared! The last 6 months I have had breakthrough sensations again.

I just wanted to thank you personally for all your advice and support that you give to all of us fellow sufferers. I may need a bit more myself in the coming weeks.

Love, Jackie xx

[Joolsg in reply to goosiegander]

Oh Jackie,How horrible that the Pramipexole is now causing augmentation. Even opioids won't cover the breakthrough because those D1 receptors will just keep firing up until you get off dopaminergic drugs completely.

The usual way is to go as slowly as possible, but even then, for the majority, it's hellish.

I know of only 2 or 3 who have not experienced a traumatic withdrawal.

It's usual to use opioids to get through withdrawal but as you're on Buprenorphine, you may have to use something that hits other receptors. I actually found cannabis was the best help- so apply now for medical cannabis for your MS/RLS via project-twenty21 so you have a supply ready for the 14 days after the last dose of Pramipexole.

Elffindoe has a withdrawal schedule and suggests half a 0.088 pill every 3 weeks but as you've been on it 12 years, try a 1/4 reduction every 3 to 4 weeks.

Everyone will help you through it.

Jools

[LanaCSR in reply to Joolsg]

Gosh, Joolsg, your story is IDENTICAL to mine!! 🥰

[Joolsg in reply to LanaCSR]

Another Buprenorphine taker? It has saved my life. Literally.

[goosiegander]

Hi there Biscuitface,

I am actually on the Buprenorphine patches as well. My patch is 70 mcg p/hour slow release. The patch lasts for 3.5 days and then I change it. This is a high dose but my M.S. and other problems factor into my required dosage. Buprenorphine takes a few weeks to "settle in" for most patients and Joolsg has outlined the side effects very well.

I feel that they have started you on way to high a dose for RLS. Do speak to your GP asap about reducing your dose but it will have to be done slowly. Going from the 52.5 mcg straight down to 20 mcg would feel terrible. Maybe go down to 30 mcg using 2 patches to begin with and see how you feel. You can wear 2 patches simultaneously, I did whilst building the dosage up. Even now, I sometimes have to add a 10 mcg patch when I am suffering badly.

I hope you will be able to adjust the dosage and get to comfortable dose for you because Buprenorphine is a fabulous drug.

Take care and keep us posted,

Jackie x

[Biscuitface in reply to goosiegander]

Thankyou for this goosiegander. I do appreciate you taking the time to reply. I'm finding this all a bit daunting right now. I was so happy initially that my RLS symptoms had disappeared . I will keep you posted

[goosiegander in reply to Biscuitface]

Hello,

Yes please, do keep us all posted. It is so worthwhile sticking with the Bupeze (same as my brand). I am sure you will be able to giggle the dose around and settle down, hopefully to an RLS free future! xx

[Jelbea]

Hello Biscuit - As the others have already said this is an enormous amount of buprenorphine. I looked up the amount on the internet and it seems as though it is the Transtec patch you might be on. I have been on buprenorphine patches (Butec) for almost 18 months and I use the l5 microgram per 24 hour patch. Yours seems to provide 52.5 micrograms per 24 hours which is more than three times my dosage. I suffer anxiety as well but I would be more concerned about your trouble with breathing. It is extremely important that you find our about this ASAP as while you are asleep your breathing could be slowed down too much, especially if you are a snorer or suffer sleep apnoea. Do you have a pulse oximeter to see how your O2 is doing in your blood? I don't want to scare you but this is a very urgent problem. This amount will also slow your pulse rate as well. Even my 15 mcg dosage slows my pulse a bit.I hope you get speaking to a doctor very soon and do let us know the outcome.

[Jelbea]

Hi Biscuit again. I see you are not on Transtec but another make. However, the dosage is the same and I think your doctor has made a very large error in starting you on this high dosage without closely monitoring your progress. I wish you well in speaking to him very soon.

[Biscuitface in reply to Jelbea]

I eventually spoke to a gp. Buprenorphine patches have been stopped. Zomorph to start at 10mg.

[Felicity21]

Hi Biscuitface, 52.5 mcg in my opinion converts to 0.0525 mg.

[SueJohnson]

The gabapentin won't help until you have been off ropinirole for a few weeks so I would advise you not to come off it but to reduce it to 600 mg taken 2 hours before bedtime and then when off ropinirole for a few weeks try gradually increasing it until it starts to work. At that point continue to take the 600 mg 2 hours before bedtime and the rest 4 hours before bedtime, but not more than 600 mg since it is not well absorbed above 600 mg. If you need more, than take the additional amoint 6 hours before bedtime.

[goosiegander]

Hi Biscuitface,

Thanks for the update. I am relieved that you got to speak to a GP so quickly, it is like wading through treacle to get to speak to one here!

I used to be on Zomorph and Oramorph together and they were working just fine but modern practice was unhappy at the opioids and doses I was on. I was very reluctant to go on to Buprenorphine but now I am so glad I agreed. I sincerely hope the Zomorph route works for you, 10mg is pretty low dose but may be enough to cover RLS and if it doesn't, you can always increase a bit.

Good luck to you and please do keep us posted. We are all behind you!

Jackie xx

[Biscuitface in reply to goosiegander]

Thankyou . I will keep in touch. I'm still getting anxiety. Never had it before, but my breathing is OK. I see on my notes I've now got an allergy to Hapoctasin on my records