Hi I am back for help! we cannot source Temgesic in South Africa anymore so my husband is using the buprenorphine patch (sovenor) plus now adding gabapentin 900mg for the past 3 days. However he is having the most terrible time, has managed to sleep from 7:30 this morning for a few hours, up the whole of last night with RLS in his shoulders and upper arms. Could it be that he is augmenting on buprenorphine and why is the gabapentin not helping at all? We are desperate and not looking forward to tonight as he his symptoms started up again at about 16:00 this afternoon. He has been rubbing camphor cream on his arms and that helps for half an hour and then back comes the RLS. His iron levels are too low and he is seeing a haematologist next week to help with this but he has haemachromia so not sure if the Doc will be able to help.
Can buprenorphine cause augmentation - Restless Legs Syn...
Can buprenorphine cause augmentation
DUH!! should read haemochromatosis, sorry so stressed!
The problem here is that your husband started gabapentin 3 days ago. When did he switch to the patch and why did he start gabapentin?Normally, Buprenorphine alone, in pill or patch form, would cover the RLS.
So I suggest, if your husband only started gabapentin 3 days ago, he should stop taking it and assess how the Buprenorphine patch is working.
At the moment, you won't knowwhethet the gabapentin is causing a worsening in his RLS or whether it's the patch.
I presume your GP has prescribed an equivalent dose? So let us know what mg temgesic he was on and what dose of patch he has been prescribed.
I'm sorry that S.Africa has taken this step.
If he stays on gabapentin or follows Joolsg's advice and then restarts it, understand that gabapentin can take 3 weeks to fully work. He should ask his doctor for 100 mg capsules and after the 3 weeks increase it by 100 mg every couple of days until he finds the dose that works for him. Take it 1-2 hours before bedtime. Since he needs more than 600 mg, he should take the extra 4 hours before bedtime as it is not as well absorbed above 600 mg. If he needs more than 1200 mg, he should take the extra 6 hours before bedtime. If he takes magnesium, take it at least 3 hours before gabapentin as it interferes with the absorption.of gabapentin. According to the Mayo Clinic Updated Algorithm on RLS: "Most RLS patients require 1200 to 1800 mg of gabapentin daily."
If takes any other medicines or over the counter supplements, if you list them here I can tell you if any of them are likely to exacerbate symptoms and can perhaps give you a safe substitute.
It’s funny Buprenorphine seems to be like marmite - you love it or hate it due to how it helps or not. It personally works really well for me but I’m on a high 35 patch as it’s not just RLS but Fybromygelia pain and spinal issues. I’m afraid Gabapentin had too many side effects for me as did duluxotine without any real benefit. I now use Amitripline for nerve pain/discomfort.I still feeling the tingle is there but it’s like someone has turned the volume right down and it’s in the background. I also have Tramadol and Oramorph for breakthrough pain but not for RLS treatment.
I believe Temgesic has not only been withdrawn in U.K. but across Europe.
I hope over the coming weeks the Gabapentin in his system will ‘kick In’ as eloquently described by SueJohnson.
Is that right that Temgesic is being withdrawn , totally ? Will they offer patients Buprenorphine ?Do you know why ?
There are a lot of patients using Temgesic in UK for RLS none of them have reached out to me about this.
Gosh if they stopped Buprenorphine in Australia I have a 3 week plan that would be very public and filmed so the whole world knew why I was being euthanised in Switzerland.
I already had the paperwork and plans in place I was in hospital in Brisbane being tortured when Dr Glen brooks from NYC emailed me and saved my life . I checked out and was in NYC 48 hrs later.From night one I slept .
Cruel disease , and very little care factor from the medical profession.
Hi, all I’ve heard from hospital is Temgesic is being phased out here in U.K. and Europe but being kept in America. I’m sorry not heard about anything in Australia.
One thing I looked up on line as I was curious why Buprenorphine was prescribed far less than the Morphine/Tramadol/Codiene and Gabapentin I was on until last June. I had become a zombie as meds just kept on being increased. At the beginning of 2022 a pack of four 35 mcg patches was £15 and you need two packs a month - £30. A good deal I thought, then the last paragraph said that the price of a box had gone up 770% in the last six months! That’s insane but something to do with a company being bought out and there now only being one supplier. 770%!!!
Is Temgesic applied as a tablet under the tongue but has the same active ingredient of the patches - Buprenorphine? I know the same drug is called by different names in different parts of the world.
There is huge pressure to take not just RLS patients but all chronic pain patients off of any form of opiate. I think this is a direct over restriction due to the opiate crisis in the USA. A blanket policy like this is so dangerous as many chronic pain sufferers need this level,of pain relief to function.
Personally swapping from the drugs I was on that had been upped and upped over the years due to augmentation and onto Buprenorphine turned my life around, the side effects of the meds were as bad as the illness itself. But we should all be judged on an individual basis.
PatrickI'm late to this post and missed the news about Temgesic.
Can you tell me which hospital informed you that Temgesic was being withdrawn in the UK?
I can't find anything on the internet about it.
One of hospital specialist pain team at Frimley Park Hospital Trust told me. But I believe the decision is part of government opiate strategy so either Gov.com or the Health department might have more information.
I wrote to Accord and Sandoz who manufacture Buprenorphine in the UK and both confirm they are continuing to manufacture sub lingual pills. Invidior manufacture the Temgesic 200mcg pills so I have written to check if they are withdrawing in the UK.
Thanks Joolsg, I think it is only Temgesic (obviously their commercial name) that is not being distributed and unfortunately we don't have any other form of buprenorphine tab in South Africa. So sad!!
That is terribly sad. I wonder if you can write to the Government Health Minister and ask them to import generic Buprenorphine pills.The patches are meant for chronic pain to give an even dose over 24 hours. Dr. Buchfuhrer, the top US RLS expert, doesn't think the patch is suitable for RLS because we need the drug in the evening and at night when dopamine levels fall.
Many RLS patients mention that the 5 or 7 day patches only last for a few days and I believe them. Too much anecdotal evidence. Hopefully, if that happens in S. Africa, the doctors will agree to change the patch more often.
Hi Joolsg unfortunately SA's public health service is a disaster, would not get help from them but I will check up if Accord or Sandoz operate in SA and write to them. Thank you so much for your help, it is much appreciated.
Hi, am trying to understand this drug as recently started the patch, will be posting more questions soon.I understood with targin you needed to be taking morning and night so you had it constantly in your system, does this not apply to Bup?
Secondly wouldn’t a patch give you the drug evening/night as well as daytime…….in regards to Dr Buchfuhrers comment that patch isn’t suitable as drug is needed in evening.
Many thanks
It's to do with the half life of the drug. Oxycontin only lasts 4 or 5 hours for the majority, even though the manufacturers say it lasts 12 hours. That's the reason Targinact is taken twice a day or every 12 hours. As the drug wears off, it causes mini withdrawals for many. However, some people get 24 /7 coverage on Oxy twice a day ( Madlegs). The most common withdrawal symptom of Oxy is RLS.Buprenorphine has a much longer half life and lasts for 23/24 hours and the way it works, you get most of the effects within the 10 hours after taking it. So if you take the pills 2 hours before sleep, it will cover you all night and most of the day as well. The patch releases a steady all day dose which isn't necessary for most people with RLS as they can move about in the day and won't usually notice daytime RLS.
That's why Dr B prefers the pills to the patch.
However, there are quite a few who do better on the patch and vice versa.
As with all things RLS, one size does not fit all.
Hopefully, the patch will suit you very well.
Hi, where do I make a new post for all to see?Perhaps you can help?
I started Bup 5 mg patch 4 wks ago, no RLS for 7 days, was unbelievable.
Now is back with same frequency but pain has gone from a 9 to 2/10.
For those who got relief w patch, what strength were you on?
Was this only medication used? Any add on meds?
My dr wants to double patch strength but I’m reluctant due to side effects . Could I add on a Bup tablet at night?
Hi Nanpat,
This is how you create a new post.
For desktop users:
1. Click on the "What's your question?" box at the top of your news feed.
2. Select the community you would like to post in from the options.
OR
1. Click on ‘My Hub’ on the top menu and select the name of the community you want to create a post in
2. On the community homepage, click on "Write" in the top right hand corner of the page.
3. Write the title and message of your post in the appropriate boxes. The title and body text must have a minimum of 5 characters to be validated. The body text has a maximum of 7000 characters.
5. To add an image, mention other members and format your post by clicking on the toolbar. Please note that image files must be 2MB or smaller.
6. To make it easier for others to find your post you can select a topic, by clicking the light-yellow label.
7. Select who the post is visible to:
"Anyone" means that the post/question, as well as the replies to it, can be seen by users who are not members of that community as well as visitors who do not have HealthUnlocked accounts.
"Only community members" means that only members of the community can see the author's username and the full post/question and replies. Non-members will only be able to see the post title.
All posts, whether for "Anyone" or for "Only community members", can be found by outside search engines, but private "Only community members" posts will still have that visibility limited.
8. If you are satisfied with your post, click the "Submit" button
For mobile users:
1. Click on the "Write" box at the top of your news feed.
2. Select the community you would like to post in from the options.
3. Follow the steps from 2. for desktop users
You have now successfully written a post/question!
Hope this helps.
Thank you so much, think I’ll manage
Can the post I sent to Jools be transferred to general rls people or do I need to re type?
Hi Nanpat, I am on a buprenorphine patch as well. The patch delivers 5 microgram/h during 7 days. On days (mostly evenings/nights) it doesn't suffice, I either add some kratom or 0.5-1 Temgesic sublingual tablet. You say your pain has been greatly reduced due to the patch, but what about the RLS symptoms, the urge to move? The 5 mcg/h is indeed a very low dose, several others need 15mcg/h, some even 35mcg/h.
Thanks for replying, the urge to move is back same as before…unfortunately, just more bearable.The pain made me wonder how I could go on to be honest.
I’ll ask my gp for the tablet as well.
Is that a better option to a stronger patch?
Did you try a stronger one?
Hoping side effects will settle
I see Kaarina has advised you how to make a post & Lotte has commented on the strength of patch.I think you'd get more people helping/commenting if you put up a separate post so I'll wait until you do that and I'll add my comments.
Thanks Paganpatrick so sorry that you have so much to deal with. I love the analogy to marmite!!
Thank you my friend. Having co-morbid conditions can be tricky but a lot of injuries from my military days too! Fortunately, my partner is an ICU nurse! Things have been imaginable better coming off the previous drugs last June over to Buprenorphine. TBH I had written myself off at 45 following 14 ops under general anaesthetic, countless day cases, 600 plus stitches, shrapnel wound in scalp, glass in eye, stab wound bad parachute jump, several nasty climbing falls as well as broken bones etc. life is so much better, I feel like I’ve been given a second life at 54, since last June with meds and spinal lumbar nerve block I’ve not only been eating out but cinema, camping, lived in a yurt for a week for our 20th Anniversary, gigs, family events and even completed the first stage of training to be a counsellor. The pain team is superb, the consultant, psychologist, physio and nurses were incredible and still are. Getting to the right medical professionals who listen then help made all the difference. I love our NHS!😀
So is Temgesic the same as buprenorphine? How can they just take it away like that? What about all the people who use it for medical reasons and benefit from it? This is crazy!! What is wrong with these people? Is there any petition or anything that can be started to bring it back?
Hi LanaCSR unfortunately I wouldn't know how to start a petition but if anybody does I am happy to join. When we discovered that Temgesic was no longer available in SA I did some research and on Google found a huge web page from a company called EUMEDICA celebrating their appointment as the distributor for Temgesic to a list of countries. South Africa was one of them. I emailed them 3 times trying to get an answer as to why we were not receiving Temgesic but they never bothered to reply. That advert has now been removed from Google and it appears there is a dispute about contracts etc. Below is a post that I cut and pasted from Hausbauer who also uses Temgesic. (I hope I am allowed to do this on this forum).
"But with regard to Temgesic this is something which pulls on my nerves considerably. It has not been available in Austria for several months now. Thank god I have two doctors who know of my plight and so I was able to buy (either by insurance or privately) some left over stocks at pharmacies. I think I have telephoned about 50 pharmacies to be able to buy Temgesic which will last me until the end of year.
I have written mails to Dublin to the manufacturer (who is still manufacturing it), to the wholesaler in Austria etc etc. It seems that the licence for Austria was bought by a Swiss firm and the Licence holder and the distributor are still disputing over contracts.
I try not to think what will happen or what I will do if no agreement is reached."
So sad, financial greed over individuals health.
Absolutely, I am sure that that must be the reason. I wonder if they give sufferers any thought at all.
I think it comes from central government policy and GPS and hospital Consultants ave new, often politically based decisions forced on them. Last year the government issued guidelines that restricted drugs could only be prescribed for 4 weeks at a time. This meant repeat prescriptions had to be submitted 12 not 6 times a year. Plus collection from chemists went up twice a year. So Drs work, doubled, prescription clerk works doubled, chemists work doubled and my carer is run ragged making sure everything is done on time so I don’t run out of drugs. Now times that by the amount of people receiving restricted drugs. Yet the Sleeping tablets, often used for self harm are handed out like smarties still!
To address your question of augmentation: don't know, but very unlikely. As far as I know, opioids, like many other medicines, may induce some tolerance and dose adjustment may be needed. Augmentation has never been mentioned in relation to opioids, as far as I know.
Or dose adjustment may be needed due to increased symptoms. Maybe something triggered the increased symptoms? That can be food, but also various types of medicines (e.g. antidepressants, sedating antihistamines, see Sue's comment), including otc ones.
Finally, what strength of buprenorphine does your husband have? Maybe it isn't enough.
From my personal experience augmentation is very real with opiates and drugs like sleeping tablets I was up to 140mg of morphine, 400 mg of Tramadol, 200mg of Codiene, 10mg of Zoplicone and 40 ml of Oramorph per day. My wife if took 1 50mg Tramadol would be asleep. On extreme agonising pain I occasionally took 6 extra on top of the other opiates and nothing except nights of not sleeping. I’m hoping Buprenorphine doesn’t have similar augmentation pattern but after 14 months it’s still as good as at the start.
What you describe is not augmentation, but called tolerance. It means you need higher doses to get the same effect. Augmentation in RLS means that the medicines causes the symptoms to actually worsen; they spread to earlier in the day and to other body parts, and the symptoms come back far sooner after you have taken your medicine, meaning the medicine doesn't last as long as it did before. It is relatively common on dopamine agonists, (extremely) rare on gabapentinoids (alpha2delta ligands) and tramadol.
Ahh, thanks for clearing that up. I mistakenly thought augment meant the adding of more medicine! I also thought until last year that RLS was just in the legs but now have it body wide especially arms and hands.
RLS spreading to hands and arms is one of the signs of augmentation ( increase in severity of RLS) and happens on DAs and Tramadol. Are you only taking Buprenorphine now?
It’s confusing as I’ve been diagnosed with peripheral neuropathy and diabetic neuropathy as well as having my carporal tunnel operated on and the ulna nerve in my elbow moved. I take Amitripline for nerve pain and Oramorph for breakthrough pain. Sorry don’t know what ‘DAs’ stands for.
BUPRENORPHINE is a stand drug , first ensure patch does not contain naloxone also I hate to tell people what they should not do however should not be taking gabapentin.with Buprenorphine.There is zero evidence of augmentation in Buprenorphine.
How long have you been on Buprenorphine.
As a wise man on this site said to me If something has changed , WHAT IS IT
so take a good look all aspects to find what has changed
Any chance there has been increased alcohol intake , sugar especially fake sugars at night was a trigger for me Metformin melatonin amitryptyline, anti depressants ,
I have had certain vitamins that have cause that exact symptom, and the fake sugar .
You have come form 5 hour half life to a much high dose with 24 fr coverage .
May I ask has the bowel been effected ?
I have been on Buprenorphine since October 2019 worked perfectly couple of glitches as mentioned some of them above however rectified very quickly after ceasing.
How long on Temgesic and how long on patch ?
The change happened when Temgesic had to be replaced with buprenorphine patches otherwise no different to before. He was on Temgesic for 2 years but before that Pexola (DA) for about 10 years with the usual ghastly consequences. He has one vice and that is 'false sugar Xylitol' in his tea and coffee which he has had for years. No other meds, no alcohol. Buprenorphine in tablet form is not available in S.A. Bowel not affected.
Regarding Xylitol, my understanding is that it is not a fake sugar like aspartame. It's a natural sugar alcohol derived from a plant source. I use it and it has no effect on my RLS.I also use stevia which is also plant based.
Thank you Birdland, I understand that Xylitol is high in oxalate which does affect my husband's RLS but by now we all know that what triggers some people doesn't trigger others. I am not sure if Xylitol is one of his triggers but he refuses to do without so will never know !!!
Metformin contributes to RLS? I've never heard this before. Is there a good substitute for Metformin that won't affect RLS?
I use three types of insulin - nova rapid - fast acting, Lantus which I long acting and Victoza which though looks like an insulin pen actually mimics metformin by binding sugar particles and excreting them. Depends if you like needles! I have heard of metformin upsetting some users stomachs but I never had a problem with it.
Hi Shumbah, may i ask why one shouldn't take buprenorphine with gabapentin? I haven't heard of that before.
What is buprenorphine? Opiate? Why does it work for some? What about augmentation?
It’s a very strong opiate, much more than morphine and is measured In Mcg’s rather than Mgs. But it has been altered to not have the usual side effects of strong opiates.