Update on...Buprenorphine seems to be failing! Help!

[restlessstoz]

Well, thank you for all the replies and the wisdom which has been offered. I saw my GP yesterday and explained the situation, told him of the solutions others had found (Lotte) and then asked him what his advice was. He thought about it and offered taking Sifrol as a first solution which I told him I'd tried and then probably augmented on as I had to take more of it to stop the symptoms and anyway I wasn't going to go back on it again regardless- (thanks Joolsg).

He was definitely not going to try Temgesic as he knew it was practically impossible to get approved in Tasmania as Shumbah indicated.

In the end after some thought he suggested adding a 5mcg patch which I could cut in half on a Wednesday which hopefully would cover the weakening of the 20mcg patch enough to get me through until Friday when I change over to a new one. I would only have the 2.5mcg patch on for those two-three days. I suspect if it doesn't work, he would be open to me using the whole 5mcg patch but then I would need authority for the added patches as he can prescribe two patches without authority but not enough for one month at a time. I will try it out this week and hopefully it will be sufficient to help.

Again, thank you for your help and I'll let you know what happens and if it works. I'm getting closer to my hip replacement so I hope to get this sorted before I go in for that, although I expect I will have enough pain relief to manage my RLS at least until I get home. Let's hope so anyway.

ORIGINAL POST...I've been on Norspan patches for three years now and suddenly I've found I'm suffering from breakthrough RL every day and not getting rest from them. I don't know what's happening and can't bear this. I have a hip replacement surgery coming up in January and I have a severely arthritic ankle which makes walking or standing very painful.

I thought my suffering was over when I started on buprenorphine but not sure what to do. I'm on 20mcg patches. I've found the last two days before the patch is changed can cause some mild symptoms as the levels drop including anxiety, sweats, and of course restless legs. Although aware of DAs dreadful side effects, took half of a 0.125 tablet on those nights to get some sleep if a cup of coffee didn't work, which it often does.

The last ten days has been horrible with some nights awake until 4am with leg symptoms and nothing seems to help. I've looked at my diet and am not taking any different medications that I haven't taken for months. I am getting a bit of cramping so upping my magnesium.

Does anyone have any suggestions please? Also, does anyone know what the equivalent dosage of buprenorphine is if I'm using 20mcg patches compared with the oral forms of the medication- I just want to know if I'm on a low, or higher dose for RLS. Thank you.

[Joolsg]

20mcg patch releases 20mcg every hour for 24 hours. So 480mcg. That's equivalent to 0.5mg pills.The patch is notorious for not covering symptoms for the stated time. As you've discovered, you are getting opioid withdrawal symptoms as they stop working. RLS is a main symptom of opioid withdrawal.

I would bin your dopamine agonists. Although it is SO tempting to take that small dose, it will simply overstimulate your D1 dopamine receptors instantly, and that will trigger augmentation very quickly and then withdrawal symptoms.

Your dose is still below the average, which is 1 -1.5mg.

So, definitely ask if you can switch to pills, throw away the dopamine agonists and ask for blood tests to make sure your iron and ferritin levels haven't dropped.

Also remember to tell the surgery team about your RLS and medication so they can adjust the anaesthetic and avoid anti emetics that trigger RLS. Zofran is safe.

Try the odd paracetamol when the legs play up and if you know your iron levels, take ferrous bisglycinate last thing at night.

[restlessstoz in reply to Joolsg]

Hi Joolsg,

Thank you so much for your very speedy reply. You should be in bed by now!!! I'm in Australia so I'm ok to be up!

Yes, I was concerned that the use of the pramipexole would augment even on using it twice a week in a small dose. I will get rid of it.

My ferritin was still at 260 two months ago when I had a blood test following my infusion over three years ago. I have some gentle iron so could take some incase that is a factor. My ferritin was 460 following infusion but didn't seem to affect my legs at all.

I'll take the information you've given me about the dosage to my GP and see if he'll increase the dose. It's very hard to get the pills here as Shumbah knows but I will have to try to convince my GP to try. Is Shumba around or did I read that she wasn't well? I know she had some tips for getting the oral medication.

Again, thank you so much for your response.

[Joolsg in reply to restlessstoz]

I think Shumbah is around, but she may not visit this site as much.

I still can't get to sleep before 12.30-1 am after decades of sleep disruption. I get my best, deepest sleep between 7am and 9.30 am. Luckily I'm retired so can wake up when I like. I've always been a night owl.

I really hope your GP agrees to either give you patches sooner, so you don't get that withdrawal gap for the last 2/3 days or agrees to switch to 0.4 or 0.5mg pills.

Wishing you luck.

[restlessstoz in reply to Joolsg]

Thank you so much Jools. I do appreciate all you do. and also for the work you're putting into the campaign to include teaching RLS to doctors. If it was to be included in the UK it would filter out here eventually. Sleep well when you do.

[Hidden in reply to restlessstoz]

I'm in Australia and have got a script for oral buprenorphine from my GP as well as my sleep specialist.

[restlessstoz in reply to Hidden]

Hi Amrob. Which state are you in and what is your script for? Did your GP need to apply to get it? I will be seeing my GP on Thursday next week so would love to have some information to tell him.

[Hidden in reply to restlessstoz]

I'm in WA. My GP just wrote a usual script for Temgesic. Even though it's a Schedule 8 drug, I don't believe there is a special application process. I just found this information "State and territory laws govern the use of some prescription medicines in each jurisdiction" so it may be that Tasmania differs from WA.

[restlessstoz in reply to Hidden]

Thanks Amrob. I'll look into it and then go armed to my GP.

[Hidden in reply to restlessstoz]

Check with your pharmacist first. They will be able to advise on what GPs may prescribe.

[restlessstoz in reply to Hidden]

Great idea. Thank you for that. Pharmacists are an undervalued resource.

[Shumbah in reply to Hidden]

Any GP can write a script for MCG version Temgesic but not

MG buprenorphine .

[Fingerandus in reply to Hidden]

Amrob really ???im in Australia my doc said no i wont give buprenorphine

[Nanpat in reply to Fingerandus]

Hi, I’m in Vic and had no trouble getting Bup tabs from my dr after telling her about success stories here, however switched back to the patch as I found tablets at night didn’t help as much.

I don’t know if others take twice a day or only at night, but I suffered terrible withdrawal

[Fingerandus in reply to Nanpat]

hi Nanpat i am in WA i have such a job to squeeze a few cocodamols out of my doc i am seeing her in early jan but she doesnt prescribe opiates .....

[Hidden in reply to Fingerandus]

Why not see a sleep specialist? I can give you the name of mine.

[Fingerandus in reply to Hidden]

hi Amrob i am seeing my doc on jan 2nd and i am asking to see a pain management specialist and im asking for an xray on my lower spine. would a sleep specialist help.... my hairdresser was diagnosed and sent for a sleep test where she had to sleep out ...

[Hidden in reply to Fingerandus]

A sleep specialist may be more comfortable prescribing opioids. Especially where you have tried other medications and they haven't helped.

[Shumbah in reply to Hidden]

Is yours Temgesic the mcg subliqual which GPs can prescribed or MG perhaps written off label ?

Mine is subliqual Buprenorphine 2 mg called SUBUTEX the GP can write the scripts however the CAVET is I have to have a now annual appointment with the drug clinic . The mind boggles with this stuff

[Shumbah in reply to Hidden]

Where about in Australia are you located ?

[Shumbah in reply to restlessstoz]

Hi lovely, yes I am around , correct I am having other significant health battles , HOWEVER a by product of being so sick is the the treatment has interesting shone a new light on perhaps the cause and treatment of RLS .

I have received months of antibiotics I started in September then hospitalised in October I was switched to IV Augmention duo Forte antibiotics , I’m not out of the woods yet , I have been on oral since November .

Once on Augmentation duo forte I very quickly noticed the reduction of my need for Buprenorphine nearly down to Zero , ( some nights none or just a spec ) this lead me to how can Antibiotics help RLS I found some research from 2012 which stated 66 percent of RLS sufffers suffered SIBO .

SIBO best treatment is the antibiotic Rifaximin and some other antibiotics can help in some cases.

There are also dietary components to treating SIBO

I have been unable to be test for SIBO which is a breathe test because of my Antibiotic treatment however I plan to.

The theory is SIBO stops iron absorption, which in the very little I knowledge I have seems anaemia is linked to SIBO .

I HAVE NOT AND WILL NOT mention this to myGP and will continue to collect my Bup scripts because it was so difficult to obtain initially and as we know anything can change with this disease.

I will find a private functional medicine clinic for SIBO testing and celiac testing .

I know the ropes in Brisbane for acquiring Buprenorphine which is 2 step process requiring GP and drug clinic . I have forgotten where you are located ?

I believe my doctor would be happy to talk to your doctor, every state is different Tasmania no hope.

Out of interest something that aggravates my RLS even now whilst on my lower dose is extra incidental leg exercise , eg extra stairs in a day ,or standing much longer than normal , walking much further than normal it’s hideous.

On a good note

Fingers crossed in all levels later 2024 we will have a RLS clinic in Australia.

We have a doctor who is scaling up on a large scale I cannot go into his business plan other than to say it is significant and will service the whole of Australia via face to face and Tele health with large team of doctors and nurses who will have all been trained by his team so all the doctors and nurse will be on the same educated page Treatments will include Iron infusions , Buprenorphine and holistic treatments.. I know he and his wife are working very hard and jumping through multiple hoops to make this happen.

happy to assist , my GP is away until mid January

PS DA s are most likely aggravating culprit.

[restlessstoz in reply to Shumbah]

Hi Shumbah, just reading back through my posts looking for info and found this about an Australian RSL clinic. Is it still in the pipeline? We desperately need it and so many people can't get the medications they need. Hope you're well and doing OK.

[Shumbah in reply to restlessstoz]

Helloooo

I have emailed him and will let you know his response . I know he opened an iron infusion clinic however he is in Perth

My GP in Brisbane is more than happy to help people , I think even if you are not in Brisbane if you can possible get to Brisbane he can actually write a script get you started and liaison with your doctor.

Australia has loosed the reigns a little on Buprenorphine if you know the right channels .

Remind me where you are located?

If this is a path you would like to go down I would like to speak to you on the phone first and speak to my GP to ensure it can be done from another state.

He is actually loving being able to help people with this condition he finds the results outstanding

[restlessstoz in reply to Shumbah]

Hi Shumbah. I'm in Tasmania and am already on buprenorphine patches. I'm interested because i also have people that I know who need help but don't have my doctor! Also because I dread a time when the patches stop working... a 'local' expert would be amazing. And maybe have an influence on the other Australian doctors via their own channels.

Thank you for replying, and for all you do to help those tortured by this condition. 🥰

[Shumbah in reply to restlessstoz]

Hello , sorry for my tardy reply

I made contact , it is still his plan ,however getting the iron clinic to run smoothly his first priority so we cannot hold our breathe and it will be in Perth.

He will most certainly let me know when it happens

Here’s hoping it comes to fruition

I was told by the clinic in Brisbane that they have eased there grip on Buprenorphine and it is easier for them to prescribe , and they release it has benefits for other medical conditions.

I would try to find someone in Victoria on Buprenorphine and see what path they have had to take.

I don’t know the name of the doctors who moved to Tasmania who is so dead against Buprenorphine.

[restlessstoz in reply to Shumbah]

Thank you Shumbah. I have had temgesic sublingual tablets prescribed for the last ten days. That's on top of the 20mcg patches. It's so good to have something that I can take if my legs start to fizzle and the tablets don't take long to work. It does worry me about the effect on my teeth, and also the cost was high- $54 for 50 tablets .2mcg. However, I could afford this perhaps on top of the patches but there's no way I can rely on them only. I will have to dicuss this with my GP when i go back in ten days.

Thanks for your reply to my queries.

[restlessstoz in reply to Joolsg]

Oh, and I have the Medical Alert printed out for the anaesthetist Jools. I gave one to the anaesthetist when I had my thyroid removed in April and had no problems with RL afterwards. It's something I have on hand at all times just in case.

[teakabeagle in reply to Joolsg]

Where are you getting information that DA’s instantly overstimulate your D1 receptors and cause augmentation quickly? I’ve not heard that before.

[Joolsg in reply to teakabeagle]

I am referring to augmentation happening quickly when you have already experienced augmentation on a dopamine agonist, and you are switched to another. Many neurologists, particularly in Europe, will prescribe Rotigitone after augmentation.Dr Buchfuhrer advised me not to accept Pramipexole or Rotigitone after I had suffered augmentation on Ropinirole. We emailed when I was going through severe augmentation in 2016 and my GP told me to drink milk.

Sure enough, by the time of my appointment with Professor Chaudhuri at King's College RLS Clinic, I was through withdrawal and my MS neurologist had asked my GP to prescribe Oxycontin and pregabalin. Professor Chaudhuri insisted on Rotigitone!!! Luckily, I listened to Dr Buchfuhrer and refused.

Dr Buchfuhrer had explained about the D1 receptors being the suspected cause of augmentation and that Dr Stefan Clements was investigating Ecopipam to down regulate the receptors, with the aim of preventing augmentation.

He also advised me not to try another dopamine agonist, because the same issue of augmentation would quickly happen again.

Dr Winkelman and Dr Berkowski and Dr Earley are all of the same view. Dr Berkowski will no longer prescribe DAs for that reason. Dr Earley's video confirms his belief that everyone on DAs WILL experience augmentation. It's just a question of when, not if.

hopkinsmedicine.org/profile...

This conflicts with the views of UK neurologists who follow the few published papers showing rates of augmentation of around 8% a year.

UK neurologists will see maybe ten or twenty RLS patients each year. Dr Buchfuhrer, Earley and Berkowski see thousands a year as they specialise in RLS. The article below mentions Dr Stefan Clements work to try to calm down the D1 receptors.

sleepreviewmag.com/sleep-di...

I also asked Dr Buchfuhrer why the Mayo Clinic Algorithm still mentions dopamine agonists, when the US experts will not prescribe them. He said they were determined to get an agreed Algorithm, to set out the benefits of iron and low dose opioids, but their European counterparts would not agree to drop dopamine agonists. The Algorithm is a compromise. In Germany, patients are still prescribed levodopa, the worst DA for augmentation.

I agree with the US experts. I've seen too many people on this forum over the last 8 years who have switched to another DA, and within weeks/months, their severe RLS is back.

[SueJohnson in reply to Joolsg]

Milk - unbelievable - WOW

[Joolsg in reply to SueJohnson]

Sadly true Sue. She looked at me sobbing after 3 days of zero sleep/rest & said, 'We all get aches as we get older. We need more calcium. Drink milk.'That was my epipheny. I researched, read every research article I could find and read Dr Buchfuhrer's book.

And vowed never to trust a UK doctor about RLS ever again.

[SueJohnson in reply to Joolsg]

And this forum has benefited from that with all your knowledge

[Fingerandus in reply to Joolsg]

Sounds like me i was crying on my last visit doc says are you depressed R... me...nodding ..she gave me 10 diazapam and said take a panadol for RLS

[restlessstoz in reply to Fingerandus]

Oh my goodness!!! I think we all need medals just to have kept on persevering after such blatant ignorance and lack of support.

[restlessstoz in reply to Joolsg]

WOW!!!!! I can't believe that doctors can be SO ignorant, unsympathetic and downright horrible. It's like the registrar at the Emergency department said the pain and nausea in my stomach (which turned out to be a twisted and slipped lap-band) was due to my restless legs!!!! Unbelievable. Mind you, she also thought that the lap-band port (where they inject extra fluid to tighten it), was a cancerous tumour!!!

And don't get me started on lap-bands- another medical disaster, yet doctors still keep doing them.

[Shumbah in reply to Joolsg]

The late Professor Allen in his last recorded RLS seminar in Vancouver apologised for ever having DAs approved for RLS he said he was mistaken in thinking RLS was like Parkinson’s and that the FDA only did a 12 week trial

[LotteM]

I have had something similar and I couldn't believe it, kept thinking I had done something different or it was something I ate or drank. But it was a different brand of patch. I kind of hope that is the case with you?

Otherwise, warmth also influences the release of the buprenorphine from the patch, making it to run out sooner. Has it been hotter than before? You are in Oz, aren't you?

Finally, I agree with Jools. Maybe your symptoms have increased. RLS does wax and wane. So maybe you (temporarily) need a bit more. I have sublingual 0.2mg pills that I use regularly on the last night of the patch-week, or when e.g. I have been far too active and symptoms break through.

I hope you find a solution! And that "things get back to normal" soon.

[restlessstoz in reply to LotteM]

Thank you too Lotte for your response. What would we do without the stalwarts of the site who are there for us all. I am SO grateful to you all.

I have wondered if having the increased pain in my ankle and hip is 'depleting' my nervous system making is more likely that my RL will kick in. I am hoping that there is some logical answer to this and not that I will go back to the hell that I was in prior to starting the patches.

It's so hard when one hasn't slept for two nights save for an hour or two, to think that it will all be ok in the morning, and to try whatever is at hand (like a half prami. tablet) even though rational thought says don't go there.

Meanwhile, I try to steer clear of any foods etc. that might exacerbate the problem, and I'm trying to balance enough movement to be healthy, without aggravating the pain in my joints. A very difficult tightrope to walk.

Whoever said getting older wasn't easy was so right! I'm only 65 and don't feel old but gosh, my body is saying something different!

By the way, it's been quite a lot cooler in Tasmania the last few days to I can't even blame that! I do hang my legs out of bed to get 'cold' if they're at all irritable- that's if I'm even in bed at all! The only thing is that in the summer when it's a bit warmer, I don't feel like a hot bath which has always (in winter) been a good relief for restless legs, but I can't say that it makes any difference overall- shower or bath.

I've always found the patches don't last the required time so this is maybe an exaggeration of that.

[restlessstoz in reply to restlessstoz]

I was thinking while I was just hanging the washing out... if the patch is depleted more by heat which we know it is, maybe not the temperature of the atmosphere is a problem but if I'm out in the garden WITH THE SUN SHINING on my patch or the clothes above my patch it would be like putting a hot water bottle on it. The sun is VERY hot here, even in cool weather so you may be onto something Lotte! Great thought. I will be more careful of being out in the sun.

Also I was thinking about the over straining of the nervous system. We know that stress can increase symptoms as well as over exercising, so it does seem to make sense that if there is an increase in the severe/chronic pain being experienced, it could have an adverse effect on the overall symptoms (rather than just the pain triggering the symptoms which is also a common experience). It's a fine distinction but do you get what I'm suggesting?

[LotteM in reply to restlessstoz]

I think you are correct on both accounts. Stress isn't good for anything, and your severe ankle pain will surely be a factor. As is direct sun on your body / patch. I got that info on the effect of warmth/heat from the site of the Dutch pharmaceutical / medicine institute, a government body. A bit like drugs.com.

Lastly, if you can, consider switching brands, trying out different ones to see which one suits you best.

[Shumbah in reply to restlessstoz]

I just noticed you are in TAS sadly I heard it is near impossible to get Buprenorphine subliqual in Tasmania

I don’t know his name but there is a head doctor who was the head of the drug clinic in Brisbane has taken role in Tasmania and he is dead against Buprenorphine even in the setting if weaning people off methadone which is one of its main uses .

Yes pain in your back down can aggravate Rls ? I require a triple fusion which I cannot have and I have to be careful not to over do. . I do find panadiene forte can help on those days. I try not to over do it. I am hopefully having Stemcell treatment in Antigua in March for my back .

Tasmania can be difficult to access some treatments . full body red light therapy is extremely helpful for the kind of pain you are referring too and PRP if you can find them. Did you RLS get worse after having lap band ? I know a lady who had her removed to fix her RLS

[restlessstoz in reply to Shumbah]

Hi Shumbah, Thank you so much for your reply. It sounds as if I've got no chance of getting sublingual buprenorphine then! Blow!!! I'll still talk to my doctor and see what other things we can try to cover the days when the patch wears off.

In answer to my lap-band. Once I had it removed, the pain and nausea vanished. It made no difference to my legs at all. It was the best think I ever did getting it out even though I had to pay for the surgery myself. The lap-band was never the silver bullet that it was purported to be.

What is the connection between the stomach and RLS then? I know the body is connected to everything but is there a specific theory Shumbah?

I'll look into the red light therapy but I don't think I could afford it, or PRP.

Good luck with your stemcell treatment.

[Shumbah in reply to restlessstoz]

aasm.org/gut-bacteria-restl....

[SueJohnson]

Pain can cause inflammation and inflammation can make RLS worse. Coffee decreases inflammation.

If your problem is just the last 2 days, you could put a new patch on at that point. Or as suggested get pills to cover the last 2 days.

[restlessstoz in reply to SueJohnson]

I didn't know that Sue about coffee and inflammation. The latest problem has been going on for a week. The usual two days at the end of the week are often difficult but that varies. I'm going to speak to my GP on Thursday and see what we can work out. Thank you for your response and your dedication to this site. I am in awe of the support that you give and the knowledge that you pass on.