Thanks to the support of several contributors to this forum and especially Joolsg, LotteM, and my patient GP, I have been able to plan a route which seems at last to be positive and I feel I should post a note on my current situation.
I am 3 months+ since my last DA rotigotine patch and at which point I had very severe dopamine agonist augmentation
I reduced oxycodone from 25mg/day (5 x5mg tablets) to 20mg/day (which did not prevent RLS breaking through) and then switched to Buprenorphine (1x 10mg weekly patch). Until the patch "took over" which takes 24hours or so (Re Lotte M) I supported the change with 1x5m oxycodone tablet (taken at 10pm).
Currently, a week later, I am about to apply the next 10mg buprenorphine patch. I have continued on 150mg pregabalin (one dose at 10pm).
My other RLS medication is 2 x 28mg tablets per day (@10pm with orange juice) of iron bisglycinate to try get my ferritin up from 40 to over 100
I have temporarily stopped (a month ago with cardiologist approval) my low dose of atorvastatin (20mg/day) and my Lansoprazole gastro resistant tablets (without a problem)
The result is as follows:-
I still get RLS symptoms in the evening (about 9-10pm) watching TV which I "walk off" before getting into bed. I then find I need to get up and "walk off" another "set" of mild RLS symptoms before I then sleep through for 5-7 hours. For me this is a success and such a boost to my life generally.
I do not think that I have yet escaped from augmentation as this can take several months and I now plan to try resetting my dopamine receptors back to normal by gradually reducing the pregabalin from 150mg to ? If I understand the paper given by Dr Earley correctly for the dopamine receptors to work correctly I need to stop the pregabalin completely at which point with the receptors working well the buprenorphine will alone be a barrier to RLS?
I would appreciate any comments and hope that I am now on the correct path?
Davchar
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davchar23
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I picked up this post from our site and followed it
QUOTE
I came across this video on Dr. Christopher Earley's profile page on John Hopkins Neurology website. They have reformatted their website, but much of his research links are available at the bottom. If you follow the link in the video to YouTube - there is a "more" button that will allow you to access a transcript with timestamps. It appears to be very current (10 mo. old), and it does have many patient case studies on Augmentation on DAs.
I posted a link to the video and some screen captures about his 12 day programme to come off DAs a couple of days ago. As davchar23 writes, you can access a transcript from the 'Show Transcript' button below the video description in YouTube:
If I were you, I would stick to your current regime (10mcg/h patch buprenorphine plus 150mg pregabalin) and see how that plays out. Evaluate after a week (?) or a bit longer if you can, whether this suffices. If not, discuss with your gp whether you should increase to a patch of 15mcg/h. They exist. Or you can add half a patch. Patches can be cut as per our common experience.
Once you get almost full coverage and you sleep through the night more or less, you can consider and discuss with your gp to slowly (!) reduce the pregabalin.
In sum, don't rush to and through changes now that things are a bit better.
Finally, I find that the location of the patch makes a difference: shoulder works best. Make sure you don't re-apply on the same spot from one week to the other. I switch sides each week, and try to find different locations on each shoulder too, so that a patch only gets on the same spot after several weeks.
I think Dr Earley is of the view that NO drugs should be taken during the withdrawal period from dopamine agonists for 2 weeks. So no pregabalin, gabapentin OR opioids.He thinks that is the only way to see a true base level and to allow the dopamine receptors to settle.
Then you start a new med 14 days after stopping the dopamine agonist. The new med could be either pregabalin or an opioid.
So, I don't think it will be useful to stop pregabalin at this stage. Especially as you still do not have 24/7 coverage.
I would stay on pregabalin, monitor your RLS and if you still get RLS 9-10 and later in a month's time, you could ask your GP for a higher dose patch. The 10mcg patch is giving you 0.24mg a day. The average dose is 1mg.
My GP has prescribed 200mcg buprenorphine tablets (under pressure ) but told me to only use half a tablet (at bedtime) per day. Do you think that as I am currently using two x 10mg patches (but could probably manage on 1x 15mg) it is enough? I will of course be able to double up if i get withdrawal symptoms but I want to avoid that if I can?
If you're currently on 2 x 10mcg patches, you are on 20mcg an hour over 24 hours. That's 0.48mg.If your GP has prescribed 200mcg pill, that is half of what you're already taking. Taking half of that pill means you would be on a quarter of your previous dose!
That may well cause opioid withdrawals, the main symptom of which is increased RLS.
To give you the correct dose equivalence, he should have prescribed 0.4mg pills.
So, all I can say is that your GP is determined to keep you on a tiny dose, but he will cause you unnecessary suffering.
The average pill dose for RLS is 1mg to 1.5mg. Five times what your GP has prescribed.
Ask him to look at the dose chart on RLS UK and to look at the Massachussetts Opioid Register which is proving that RLS patients do NOT become addicted to opioids ( unless there's a history of abuse) and do NOT develop tolerance (the need to keep increasing the dose to achieve the same cover).
Thank you for your detailed reply.......much appreciated. I had a feeling when the GP did the calculations he was not sure where to pitch the starting dose and I am glad I asked you.
I am a bit concerned to put more pressure on him at moment as he is trying to help but keeps saying "this is all off license". What does that mean?
I certainly don't want to go back the RLS situation I was in a few weeks ago as Buprenorphine is giving me my sleep back. Therefore I think I will ignore the first idea of half a tablet per day (ie o.1mg per day) and take half a tablet twice a day (ie O.2mg (at bedtime and at noon I think?). I suspect that the remains of the patches will be therefore for a couple of days?
In the meantime I will refer him politely to the two references you mentioned.
No need to take half dose at noon. Buprenorphine pills have a half life of 25 hours.Take 0.2mg around 8 or 9pm and it will cover you for 25 hours.
ALL medicines for RLS, except dopamine agonists and Targinact, are prescribed 'off licence'.
That means the medicines have not undergone clinical trials to test them on RLS.
Many medicines are prescribed 'off licence'. Pregabalin and gabapentin are not licensed for RLS or for pain, but it was discovered they helped both.
Legally, it means that if anything goes wrong, the doctor can lose their licence to practise.
However, if the doctor can show he/she researched the use of Buprenorphine ( looking at the Mayo Clinic Algorithm) they have a good argument if challenged.
I do hope the much lower dose helps and that you don't experience opioid withdrawals.
Do keep in touch with your GP though as they should ensure that they give a correct dose equivalence if switching between opioids.
I will certainly keep in touch with my GP as i want him to follow up on the two references you quoted. At the same time I will tell him that I am taking 1 200mcg tablet late evening.
Incidentally I thought you might be interested in what my experience with the patches has been.
I have established that for me personally each patch only lasts 5 or absolute maximum 6 days. I have had withdrawal symptoms (ie anxiety, depression and loss of appetite etc) proven to be opioid withdrawal because a one off low dose oxycodone tablet eliminated the said symptoms within a couple of hours allowing the next patch to takeover. I am hoping to achieve better "control" with the 200mcg tablets which of course you said to me from the outset. Having said that the patches have given me a much improved sleep regime. I have also managed to cut back on pregabalin to 100mg/day and targeting 25/50mg in coming weeks.
i was looking for the algorithm you suggested for my GP to look at in case he is worried by prescribing off license. I thought it would be under "R" for RSL
I hope you don't mind but I want to tell you where I am now with my "escape" from augmentation. Thanks mainly to your help (and others on this site) I am now getting a decent nights sleep free of RLS.
I have stopped (over a week ago) the buprenorphine patches which I found hard to monitor and replaced with 2x200mcg Sandoz buprenorphine tablets (both taken under tongue at bedtime). I was on 2x10mg "weekly" patches which I believe were equivalent to 0.48 mg per day.
My GP has insisted that with the tablets I limit them to 2x 200mcg ie 0.4mg per day. This dose appears to give me a good sleep regime from midnight to 6am but I do get mild RLS whilst watching TV for a longer period in the evening. I have also found that occasionally I feel as if I am having a mini opioid withdrawal in the afternoon and this disappeared if I took just one 5mg oxycodone tablet.
Does this mix of tablets seem reasonable to you or would you suggest pressing the GP to add another 100mcg buprenorphine tablet ie 0.5mg per day total.
I have reduced my pregabalin to 75mg per day taken once at noon
I am very appreciative of your help and support on my "escape"! How soon do you think it would be reasonable to try reduce buprenorphine to check if my DA receptors have recovered or are permanently damaged?
As you only recently stopped dopamine agonists, that is a fantastic result. Most people take at least a year to find meds that cover their RLS enough to sleep well.I suggest you try 0.2mg at 9pm and 0.2mg just before sleep. That will lengthen the cover of the Buprenorphine and might stop that mild RLS in the early evening.
Stretching, squatting can also resolve it. Then you could stop the Oxycontin. I suspect that might be making things worse.
I don't think you should think of reducing or stopping Buprenorphine.
You had RLS before starting dopamine agonists and it's highly unlikely that the disease has gone away.
The dopamine receptors that were overstimulated by dopamine agonists may settle, but you will still have RLS.
Any damage caused by dopamine agonists usually prevents pregabalin/gabapentin and/or iron infusions from working. Opioids affect different brain receptors and that is why they work so well for refractory RLS.
Most of us will need to be on meds for life.
Did you think that at some point you could stop ALL meds? That happens rarely, when the cause of RLS is obvious (eg very low brain iron).
Yes it seems when i read about other persons long battle to get to where I am that I have been lucky. I honestly believe that i have achieved this only by listening to the advice given by yourself and other contributors to this forum.. so thank you again!
As far as getting back to "normality" my comments are:-
-Before my last surgery (3or 4 different GPS) got to work on me with several different DAs and other so called "cures" I was only suffering from very mild RLS and I had hoped to get back to that and possibly a low dose of opioid but no pregabalin (it causes me to have a bad balance). If as you say my receptors are too far "gone" then I will need buprenorphine at say 0.2 -0.4 mg for life and I accept this even though I am still working hard on getting my ferritin level up >100 (currently <50).
I hope you don't mind but i need the benefit of your experience with buprenorphine.
As you correctly advised I split the 0.4 dose into 2 at 9pm and 11-30pm and that seems to have helped but I am now experiencing another side effect which I am not sure how to react to and that is depression and anxiety. I have lived on my own for several years and have not suffered from this so it is most likely the opioid (oxycodone did not have this effect) causing it?
I have not changed my buprenorphine dose from 2x200mcg (ie o.4gm/day) and 75mg pregabalin. I have a GP appointment next week and I was going to mention it to him but i am concerned he will prescribe antidepressants and I am concerned they will allow the RLS to gain ground again?
Could you tell me anything on Buprenorphine and depression/anxiety and if anything I can do about it. Increase the pregabalin?
I apologise coming back to you again but i need some advice on the buprenorphine side effects that I am suffering from.
I seem to have successfully blocked RLS by following your dosing pattern for my 0.4mgs per day buprenorphine (ie 0.2 at 9pm and 0.2 at bed time) and am sleeping reasonably well but after about a month on the drug (patches then tablets) i am still suffering from a high level of anxiety, depression, sweating (in mornings), day time tiredness and balance issues. I am now taking 62.5 mgs per day of pregabalin.
Can you please tell me your experience on these side effects? Do you think i should insist that my GP prescribes trazodone and/or that i should increase the pregabalin and ignore the possibly increase in my balance issues?
I hope you can give me some thoughts on my current situation. i have a GP appoinment tomorrow (ie 3oth January)
It's highly likely that pregabalin is causing your balance issues, so reducing that is a good idea.The sweating does reduce over severa months, but I take cetirazine ( no sedating anti histamine) every night and it helps.
I accept the tiredness, but I'm used to it as I have MS and the fatigue is something I've lived with for 30 years. I often have to sleep for 20 mins in the day. But I now embrace that, after decades of severe RLS.
The anxiety and depression are controlled by pregabalin for me, but you clearly do not respond to pregabalin in the same way.
You can try trazodone or switch to gabapentin. Sometimes the side effects of pregabalin do not happen with gabapentin. A low dose of gabapentin, say 200 or 300 mg might reduce your anxiety.
Hopefully your GP will talk through the options. But make sure he/she knows that all anti depressants, except trazodone and wellbutrin, worsen RLS.
Thank you for your reply which i appreciate very much.
Whilst I am not sure whether pregabalin does cause my gross motor function problems (only likely) I seem to remember you saying you took a small dose to correct anxiety etc. Was it <110mg in one dose per day?
I took 150mg for 5 years with 25mg Oxycontin, initially to counter severe Oxycontin panic attacks.However, I slowly reduced down to zero and the panic attacks had disappeared.
I then started Buprenorphine and the panic attacks started after 5 weeks. So I added 50mg pregabalin and it instantly stopped all panic/anxiety. I have slowly reduced down to 12.5mg and it controls the anxiety.
Yes I realise that but thanks the information. I believe that my depression/anxiety may be a type of panic attack and therefore I am again thinking that i need a small dose perhaps 75 mg /day pregabalin or equivalent gabapentin alongside the buprenorphine.
I discussed various options with GP and he agreed to try change to 200mg/300mg (equiv to 62.5mg pregabalin) to try get from balance problems whilst maintaining relief from buprenorphine anxiety/panic attacks.
I swopped to gabapentin for a couple of days and felt worse and so I am now reluctant to continue with gabapentin? I realise and accept that all drugs give different problems but please if I may tell you in more detail my issues with the following mix of meds:-
62.5mgs pregabalin taken daily at noon
0.2mg buprenorphine tablet at 9pm daily
0.2mg buprenorphine tablet daily at 11pm/midnight ie total buprenorphine 0.4mg per day.
Issue- limited RLS but only in early evening and I get a good sleep regime until about 5am when I am woken with very bad nausea problem which is stopped by getting up and walking around. I also still have very significant balance issues and "weak legs"
i would appreciate any comments. I perhaps didn't give the gabapentin chance to work and should have overlapped with the pregabalin?
It does appear that you are sensitive to gabapentinoids. I can only assume the balance issues and leg weakness is a side effect of pregabalin. It seems gabapentin doesn't agree with you either.However, the Buprenorphine is definitely helping the RLS.
Speak to your GP again and explain what's happening. You may need to try another med for the anxiety. Perhaps trazodone or Bupropion.
I apologise for bothering you again but I am struggling with what appear to be the side effects of buprenorphine and I know you have been through this scenario yourself.
There is no doubt that the Buprenorphine is acting as a barrier to RLS and although the current dose (0.4mg taken in two parts at about 8pm & 11pm) does not entirely prevent RLS in the evenings I do get to sleep.
I have changed from pregabalin (62.5mg) to 3x100mg doses (ie 300mg/day total) of Gabapentin without any improvement (and possibly a deterioration) of the nausea/breathing problem which now wakens me early each morning or any improvement in my balance.
I am also still struggling (just in the morning) with anxiety/and depression. Whilst of course i do not want to go back to RLS sleepless nights i do need to find answer to the above side effects. i am seeing my GP again on 16th February and will again ask for Trazodone but I wondered whether or not you had experienced similar problems on your buprenorphine journey?
The nausea was a problem the first 10 days. Cannabis resolved it.Breathing is a possible adverse side effect of taking opioids and gabapentinoids. Study below.
There have been studies and warnings. You haven't mentioned Breathing issues before, only depression and anxiety.
Thank you for your reply.. I have called GP and they are ringing me back. I will of course immediately change back to pregabalin with which i had a much less problem with the "breathing" which i thought was nausea as it seemed to come from my stomach and was eased by taking deep breaths. I have also had much more hot/cold sweats with the gabapentin after taking food or drinks.
As the paper you sent me is a government issue shouldn't the GP know about it and not supply gabapentin concomitant with buprenorphine?
I think this means that i will have to continue with my reduction of pregabalin?
I am now very confused as the surgery (not my direct GP) has rung me back and when I described the breathing symptoms he was adamant that gabapentin was NOT the cause and I should not change back to pregabalin but continue with gabapentin? I described the waking up with nausea/taking deep breaths to him and he said that isn't severe respiratory depression ("SRD") ?
The doctor said SRD is when a person has difficulty to breath whilst my problem is to an urge to breath caused by discomfort is stomach area. I then breath quickly with no difficulty to ease the discomfort. I had a similar problem whilst on co-codamol during my early stages of augmentation. I stopped the co-codamol and breathing problem disappeared
He told me to continue with the gabapentin until I see the doctor who prescribed the buprenorphine and gabapentin on 16th OR stop gabapentin all together which he admitted might cause withdrawal symptoms.
i think I will simply reduce the gabapentin which I have not been on for more than a few days form 300mgs/day to 200mgs and see? Do you think that is a good plan?
I realise that i may me unfair to ask you for a second opinion but I am concerned.
I am not a doctor Dave, and I do not know enough about respiratory issues, and if your GP has confirmed that you are NOT experiencing respiratory depression, and he believes the problem is a side effect of opioids, I defer to him on that.However, you should trust your gut instinct and if you believe you were better on pregabalin, then revert to that.
But you still need to address the opioid anxiety/panic/depression. It should ease off as your body adjusts, but, in the meantime, trazodone might help.
Thank you for replying as I thought you might not as I was asking a bit too much but I am a bit confused about the "wake up calls" I get now that my RLS is under control due to Buprenorphine. As soon as I get out of bed my nausea is gone and my breathing normal throughout the day and even during first hours of sleep.
I have decided to cut back on Gabapentin to a slightly smaller dose tonight and hope that I don't get withdrawal problems.
I will keep you informed so that you can store my experience in your already sizeable knowledge of RLS & buprenorphine.
Thank you for your support and kind regards to you
I do hope your strange breathing issues can be resolved. Anxiety is a common side of opioids and that can manifest as panic and a feeling of shortness of breath.
Every morning I read your posts helping fellow RLS sufferers through your experience and I applaud you for that. Hopefully after my nice comments you won't mind me asking you again for some support on my side effects from buprenorphine
After my last exchange of information with you I continued (on a reduced dose) gabapentin at 2x100mg (split morning and evening). This is slightly less than the pregabalin equivalent i was on before (62.5mg ) but I have had increased side effects. I think that my breathing problem is actually nausea (caused by the buprenorphine) which makes me want to take deep breathes as opposed to respiratory depression.
As soon as I eat or drink anything I break out into a hot then cold sweat and so I am beginning to think that the gabapentin is not working in a good way for me. I will give it another day or so and then if no change go back to 62.5 mg of pregabalin. I am determined to maintain the 0.4 mg buprenorphine (=no RLS) and I will accept the balance issues I get with pregabalin (& gabapentin) as a lesser evil. I will again ask my GP to try trazodone.
Do you think my plan makes sense or am I missing something?
It makes sense. The nausea from the Buprenorphine was completely overwhelming for me at first. I was literally bed bound for 10 days, couldn't eat and felt dreadful. However, for the first time in 10 years, I had zero RLS and was sleeping 7/8 hours.
I was therefore determined to resolve the nausea. In the USA they prescribe Zofran, but here in the UK, only a hospital doctor can dispense Zofran. I asked my MS neurologist to prescribe it. I can email my MS team any time & get a response within a day or two. Sadly, that doesn't apply to the RLS neurological team!!
They agreed to prescribe, but, reading the side effects put me off, so Ididn't fill the script.
I then tried stem ginger and grated raw ginger in hot water.
Then I remembered chemo patients use cannabis for nausea, and I have medical cannabis for my MS nerve pain and my RLS sleep disruption. I hadn't used it for a while.
Taking 0.3ml of cannabis oil with20% THC every night for 10 days sorted the nausea.
When I stopped the cannabis, the nausea had disappeared.
I suggest you consider trying medical cannabis, or ginger. Alternatively, buy some Kwells sea sickness pills.
If you can control the nausea, the morning breathing might improve.
I may not be around over the next 2 weeks as my elderly mother is very ill again, and I suspect this time, she won't recover.
I am sorry and sincerely apologise if I you are with your mother and I will of course understand if i do not get a response. However I am struggling with my latest buprenorphine treatment so just in case you were around i thought i would try.
I am reaching out for your support and comments on the latest "twist" in my buprenorphine story.
It is 4am and last night I went to bed at 11pm and slept without any RLS until 2-45 when after a visit to bathroom I was immediately bothered by the nausea and breathing ( I mentioned in earlier posts and have been unable to sleep since that time.
I am in the middle of the change back from tablets to 15mcg patches as agreed with my GP and yesterday I took my usual 2x 200mcg tablets (in the late afternoon and early evening). I had previously put on a 10mcg patch (leftover from before) and assumed it wouldn't start to work for 24-36hours.(about now in fact).
I have tried ginger and cetirizine but so far (only 3 or 4 days trial) no affect
i have also got two "new" side effects namely a sharp ache in my shoulder blades and a sore tongue (from tablets?)
Hope you can comment as I am a bit mystified by latest scenario?
My mother is currently at my brother's house and stable, for now so I haven't headed North yet.Interestingly, she has just started having trouble 'breathing'. She's on morphine. The doctors have fully assessed her and it isn't a breathing issue. It's opioid panic attacks, like I get and what you appear to be having.
She has been prescribed lorazepam and given a hand held electric fan for when the opioid 'heat flushes' start.
I have to use a sedating med to counter the opioid panic attacks, so does my mother.
I think you are the same.
Ask your GP for a sedating med.
You may not need it for longer than a month or two, until your body adjusts to the Buprenorphine.
Thank you for your reply and pleased to hear your mother is stable.
I have a question about what you term as "opioid panic attack". Is this the same as opioid withdrawal symptoms? I suspect these show themselves differently?
My GP said that my nausea and resultant need to take deep rapid breathes is the effect the buprenorphine has on the gut. which he feels may be less "dramatic" using the steady opioid release from a patch? Hence going forward he has prescribed 15mcg patches (ie approx 0.36mg per day opioid). I suspect i might need 20mcg patches to block my RLS (0.48mg/day) which is more than the 2x 200 mcg tablets which have already been shown to block my RLS.
I hope you don't mind but I just want to discuss where I am up to on stabilising my long term mediation. Some time ago you warned me it would take several months to "escape from augmentation" and settle on a medication programme. It is now 5 months since I came off DAs (Rotigotine) completely.
In the last couple of weeks I have gone back to buprenorphine 15mcg/hr weekly patches (ie 0.36mg per day) in an attempt to reduce the nausea which seemed to have increased with tablets (@ 0.4mg per day) The tablets were also affected (making sore) my tongue.
After a calculated switch plan I am now 4 days into my first 15mcg patch and nausea is still very bad during night and early morning. I also feel tired and generally lacklustre despite sleeping reasonably well (no RLS only nausea). At the same time (ie 2/3 days ago I reduced my pregabalin from 50mg per day to 37.5mg/day in an attempt to improve my balance. I am told that pregabalin does affect a person's central motor (in movement) control and I am trying to reduce it slowly but completely.
On average do users find that the bupre patches last more or less than 5 days from initial placement. Incidentally I have bought some simply water proof patches to cover that bupre patch when i shower.
I have tried cetirizine (for hot/cold sweats and Kwells tablets (for nausea) but I am still struggling during night with nausea and after breakfast with the sweats and less but some nausea. My tongue has improved since changing from tablets to patches. I am not certain but i think the nausea after breakfast is reduced by the use of an extra 12.5/25 mg of pregabalin.
I would appreciate your thoughts on my progress or otherwise on escaping augmentation
Sadly my mother hasn't got long now. We've been warned we may have to dash up North any time. She is dying. Her GP has said it could be months, but probably weeks.
You are through augmentation and withdrawal. You don't have RLS and you don't have any withdrawal symptoms. That is a positive. I have never used patches, but the few people who do use them report that they run out at around Day 5.
Buprenorphine nausea should settle after a few weeks. You are clearly very sensitive.
I can only suggest you obtain medical cannabis as soon as possible and start taking 0.2ml at night and 0.1ml whenever you feel nauseous. Zofran is the anti nausea med used to combat opioid nausea, but it's difficult to obtain in the UK. Only hospitals can prescribe it in most health authorities. But, ask your GP. He may have some suggestions.
Tiredness is also a common side effect of opioids. I accept it as a pleasant alternative to being unable to sit still.
It's a shame that your RLS is completely covered, but nausea and tiredness are troubling you. I'm afraid I can't think of anything to help, other than what I've suggested above.
Thank you for your fast response to my questions and I am sorry for your mother's situation. it is always a difficult assessment doctors have to make. They told me my wife had hours to live over a year ago (she has dementia, is almost completely paralysed, cannot speak and does not recognise me) and yet she is still hanging on in a care home. I am also from "the north" being a Yorkshireman.
You say I am over augmentation and do not have RLS but if I stop or allow a patch to "expire" then I still have RLS (ie withdrawal symptoms?) so does that mean that my dopamine receptors have been permanently damaged and will never go back to their default condition? So is it a better description to say my RLS is under control (ie blocked or "covered") with buprenorphine & a small back up of pregabalin? I of course can accept both the tiredness and some nausea as better than RLS itself
I have not mentioned medical cannabis or Zofran to my GP as he was concerned enough about prescribing Buprenorphine (ie off license). Is medical cannabis available on license through most GPs?
⁷I'm sorry to hear about your wife. RLS doesn't stop when you get off dopamine agonists and through withdrawal. It can go back to how it was before you started dopamine agonists, but to find out what that it like, you have to be completely med free for between 2 and 4 weeks.
There are some people who stop dopamine agonists and do not start any replacement medication. They spend longer in withdrawal. They can then see what their base level of RLS is really like. Some lucky people can manage without medication.
However, most of us start replacement meds straight away to manage our continuing RLS.
In your case, Buprenorphine and pregabalin are completely controlling your RLS. If you stop both, you will experience new withdrawal symptoms.
So, it's up to you. You can continue on the Buprenorphine and low dose pregabalin, or slowly reduce pregabalin to zero then reduce /stop the patch. You will very likely experience opioid withdrawals for around 4 to 6 weeks.
You could then see what your base level is like.
However, if your RLS was serious enough to require dopamine agonists originally, that will probably still be the case.
I do know two people who came off dopamine agonists and then opioids and are now not taking any medications. But they responded well to IV iron infusions.
Thanks for your as usual informative response. In this case however I did suspect what you told me and I am probably too old and too scared of the opioid withdrawal period to even try to test out my base level. I will probably try to eliminate the Pregabalin but stick with the buprenorphine.
Sorry but you didn't comment on my question about medical cannabis availability?
I am struggling to get my head around why I am getting severe nausea from the medication regime that has worked very well and blocked my RLS. for past month or more. My current stable meds are:-
+25 mg pregabalin tablet (taken about midday daily)
1 Kwells tablet each night before sleep
1 Cetrizine tablet before bed (to try reduce "sweats" but unsuccessful)
Last night the nausea was so bad that it woke me about 2am and after that I got very little sleep because of it (not RSL). By nausea I mean a gut feeling that makes me take deep breathes to remove and only seems to come on when I am lying down.
Could it be that the patch which had been in place for 4 days had partially expired and I was having a mini opioid withdrawal problem? I must repeat that I did not experience any RSL symptoms and therefore it seems that RSL for me is blocked at 0.36mg/day?
I seem to remember you making a comment that pregabalin offsets the the insomnia caused by an opioid? Whilst I am reluctant to increase the pregabalin do you think i might have reduced it too much and that the opioid is causing the insomnia or perhaps I should take the pregabalin late evening?
Am I correct to work on the basis that a new patch takes 12-24 hours to be effective and could run out (or significantly weaken) in 3 to 4 days?
You have in the past posted to me that you also suffered very badly from nausea and therefore I wondered if you could throw some light on my current problem?
I have zero experience of the patch Dave, so can't answer your particular questions. All I know from what others on the patch are saying, is that the patch doesn't last for more than 4 or 5 days.What you are experiencing sounds more like panic attacks.
I would take pregabalin in the evening. When reducing any meds for RLS, the best advice is to reduce extremely slowly to avoid withdrawal symptoms. If you reduced pregabalin too quickly, it may have caused withdrawals. It also may have been stopping the opioid 'panic attacks' so consider going back up, slowly, to 50mg then 75mg to see if the waking/gulping/nausea attacks stop.
I suggest you discuss fully with your GP, switch pregabalin to evening, around an hour before bed.
Also, try lying in an elevated position with your head much higher than your feet.
Your GP confirmed you were not experiencing respiratory depression, so it does sound like a 'panic attack' experience.
You may have to try medical cannabis for a while to counter the 'nausea'.
Thanks for that. The fact that both Joolsg and you both feel my nausea is an opioid "panic attack" means I will take the comment very seriously. I assume that such an attack shows itself differently depending on the person? With me I have no RLS but just a terrible feeling in my gut that makes me want to gasp for breath Is the cause of an opioid panic attack because not enough opioid in the system.? What other opioid panic attack symptoms have you heard about?
I am finding it very difficult to know when to put a fresh patch on . The 15mcg patch currently in place should be ok until next Sunday at least and therefore I am not really looking forward to going to bed tonight not knowing whether the patch has run out or not. I have put a new patch and hopefully it will start to work within say 12-18hours.
Sorry to appear a bit of a "wimp" on this but constantly changing medications and dosages is a bit wearing but i do appreciate your support
Davchar, other people constantly mention that the patch doesn’t last as long as it should. Indeed, several people have mentioned that, but the ones for whom the patch lasts its full 7d don’t or hardly take the effort to mention it here. So, instead of worrying, just wait and see. If you are waken up by RLS in the night and cannot walk it off in 5-10min (that is occasionally acceptable, don’t you think?) and if that happens repeatedly on the same night of the week, then you know the patch doesn't last long enough. I do find that I get occasional RLS, but usually in the evening, virtually never at night. I suspect other things than an insufficient patch are playing a role at those times.
I still have buprenorphine 0.2mg tablets (Temgesic) from my time before I switched to the patch. They work quite fast, say 30-45min. Knowing they are there and I can take one (or even half a pill) is reassuring. An option to discuss with your gp? To have one package available on an as needed basis for ‘emergencies’?
Finally, I find if I put in a new patch in the morning, it works that same night.
I would appreciate it if you could describe to me some of the symptoms you have come across which are applicable to the term "opioid panic" attack? Is such an attack caused by the quantity of opioid (and perhaps pregabalin) in a person's system?
I have decided to increase my pregabalin back to 50mcg tonight just in case the reduction was the cause of my extremely bad reaction last night.
Sorry to both you again but I am becoming very depressed about the task involved in finding the correct balance of opioid and pregabalin etc
Davchar,I may be too late withthis reply. If so, remember for next week.
When I am due a new patch, I always keep the old one on for 1-2 days. That is for two reasons:
1. As you now know (it will also be on the leaflet) the new patch takes quite a few hours to start working and you still want coverage during those hours.
2. The old patch will still have some medicine left in it that gets into your system as longas you leave it on. The decreasing amount of the old patch together with the increasing amount from your mee patch ensure more or less stable levels of buprenorphine in your system.
Good morning after another even better night's sleep. No disturbances except of course visits to bathroom as normal for 81 year old!
Thanks and not too late as I think you mentioned this in an earlier post and I followed your advice when I put on the new patch at noon yesterday. I have just (ie 20 hours later) this morning removed the old patch. Hopefully I will have got the timing right as i was worried about over providing the buprenorphine I will let you know and thanks again.
I hope you are well and apologise for contacting you again but as a fellow Buprenorphine user I wanted to ask whether you had any experience of the side effects I am currently suffering from.
Bupre is certainly acting as a barrier against RLS but in return I have:-
-significant nausea which wakes me up every morning quite early
-anxiety and depression attacks in mornings
-hot & cold sweats after eating
I am currently taking 0.4mg (2 x 200mcg tablets) of buprenorphine and 300mg /day of Gabapentin instead of Pregabalin in an effort to improve balance issues reputedly caused by the latter.
i would appreciate please any thoughts you might have on my current situation
Sorry for the late reply Davchar. And sorry to hear you are still struggling with the side effects. Unfortunately I cannot advise you on those side effects, as I have no experience with them. Doctors say that - in general - most side effects disappear after a short or a longer while. But some stay. With medicines, it is often about finding a balance between effects and side-effects, and trying to find a positive one.
Have you already tried to take the otc antihistamine cetrizine for the sweats? That nay be worth sa serious try (for several days up to, say, a week).
Joolsg is a better source of advice about these side effects, as she has most of them too.
I wish I could be of more help. And I certainly wish the side effects diminish and resolve soon.
Thank you for your comments and support . I have also had some helpful comments from Joolsg. I am seeing my doctor next week and will ask ask about cetrizine
Since i last posted to you i have exchanged a few posts with Joolsg who has helped with a couple of points on how to deal with the side effects of buprenorphine. i just wanted to ask you for a little more of your experience please?
I am still on the same dose of buprenorphine tablets (0.4mg/day taken at 9pm and 11pm approx. I am clear of RLS during the night but the next morning my anxiety and nausea are still very difficult to cope with. i do not remember having these problems with patches, did you? My theory is that the tablets give higher level of the drug in the blood stream initially and cause insomnia and anxiety whilst the patch gives a lower concentration in the blood at any one time? i have changed from Pregabalin to gabapentin but no improvement on the side effects.
Davchar, I have partly followed your interactions with jools and just read through the whole post and replies. Tough situation for you with the continued nausea and balance issues.
I can only tell you my experiences and thoughts about what is going on. As you know I am on buprenorphine patches (5 mcg/h). But I started buprenorphine with sublingual pills. Initially only half a pill sufficed, but after several weeks I needed one pill of 0.2 mg and that amount still was enough to control the rls for a long time (which I took for about 1-1.5 years) . I always do well on low doses on medicines
My problem with the pills was “mini-withdrawal” each morning. It started soon after I got out of bed. When I sat down (breakfast, reading, etc) I felt a nagging restlessness or uneasiness in my body (shoulders, trunk, spreading to legs and arms). It wouldn’t settle for many hours. I could only solve it by taking another buprenorphine pill, but the restlessness came back later during the day and I needed another 1-2 re-doses of the buprenorphine pill to keep it to a minimum.
After consulting with my gp and next the pharmacist, the latter said that this way I had a much higher total daily dose of buprenorphine (0.6-1.0 mg) than needed for the RLS only (0.2mg in the evening) and that maybe I was better off with a continuous dose provided by a patch. Indeed, the much lower patch dose providing a stable amount of buprenorphine worked well for my RLS and the mini-withdrawals have gone. The stability of the amount of buprenorphine in my blood seems more important than the - much higher - peaked doses from the pills.
So, based on mine and your own experience, you may too be better off with a patch. Earlier, your 10mcg/h patch wasn’t quite enough to control your RLS. But you may want to consider to restart the buprenorphine patch at your previous dose (10mcg/h) and see how it works out now. As it has now been some time since your last DA dose. If needed, there are also 15 mcg/h patches (and 20, 25 and 35 I think). If the patches are better for you in terms of side effects (no nausea, fewer sweats) , you can even -after a stable while- consider reducing the gabapentin or pregabalin even further, maybe to zero.
I also have still some sweats. Very much reduced thanks to HRT (hormone replace treatment for women in/after menopause) which in my case doesn’t worsen the RLS. No option for you though. But cetrizine (anti histamine for allergies) may work, and you don’t need a prescription.
Long story short. As you already suggested, you seemed to have fewer side effects with the buprenorphine patches. Maybe you just have to find the right dose to control the RLS. I really hope a switch back to the patch will work out well for you. Definitely worth a try, I think. So do discuss with your doctor. Meanwhile, I keep my fingers crossed. You deserve some rest!
One final note: dose of pills do not compare directly to doses of patches. The absorption rates differ. And also because the patches give a stable dose, whereas pills give a peak dose followed by a decline.
Thank you so much for your help and especially that you spared the time to review past posts. Your detailed note seems to confirm my own thinking in that the tablet "peaks" and causes greater side effects (eg nausea, sweats and mini withdrawals).
I will discuss with my GP next week with a view to going back onto patches if things don't improve by then (ie in a week's time)
i will let you know how I progress and thank you again for your support
Further to my previous reply I have an appointment with my GP tomorrow and if you do not mind I would just like to clarify a couple of points with you.
1 I am still on the same buprenorphine tablet dose as i said earlier (2 x200mcg taken at 9m and bedtime) but i am getting the nausea (are these mini withdrawals?) every morning quite early (5-6am) which prevent sleep. i am also having problems in my shoulders and neck when I get up
2 The nausea usually disappears by midday but during the morning if i sit down and do nothing I tend to go to doze and am woken suddenly we the nausea feeling in my abdomen
3 The nausea whilst giving me unpleasant pain is alleviated by taking deep breathes
Dear Davchar, I am sorry to learn that the nausea hasn’t cleared yet. I am also sorry that I have no experience or wisdom to offer to your experiences.
The withdrawal I was experiencing in the morning when I still took the buprenorphine in pill form was an uneasy feeling in my body, mostly upper part. It made me want to move, but I couldn’t shake it off. A bit like rls-symptoms, but in my upper body mostly and less sharply defined. I suspected it was withdrawal and I could alleviate it by taking (half) a pill in the morning. When I did the feeling disappeared, whereas it remained for many hours when I didn’t. That kind of proved it was withdrawal. Have you tried that?
Please let me know what you and the gp decide tomorrow. I hope you’ll find a way out.
I went to my GP this morning and he has agreed to change to 15mcg patches and a reducing dose of pregabalin (50mg/day at moment). He feels that it is fairly normal with many opioids that one experiences gut problems and hence nausea.
i also get an ache in my neck and on one side of my upper back which i cannot identify as anything other than a cause being pinned at the door of opioids? Did you experience anything like that?
I will let you know how i get on with new recipe of drugs.
I am reaching out for your support and comments on the latest "twist" in my buprenorphine story.
It is 4am and last night I went to bed at 11pm and slept without any RLS until 2-45 when after a visit to bathroom I was immediately bothered by the nausea i mentioned in earlier posts and have been unable to sleep since that time.
I am in the middle of the change back from tablets to 15mcg patches as agreed with my GP and yesterday I took my usual 2x 200mcg tablets (in the late afternoon and early evening). I had previously put on a 10mcg patch (leftover from before) and assumed it wouldn't start to work for 24-36hours.(about now in fact).
i have also got two "new" side effects namely a sharp ache in my shoulder blades and a sore tongue (from tablets?)
I have not yet gone to Joolsg (our buprenorphine guru) as she is out of contact due to illness of the aged mother.
Hope you can comment as i am a bit mystified by lastest scenario?
Davchar, reading your story in it s various installments, I am not sure your nausea and pain is related to the buprenorphine. Have you considered this option? That you have pain in your shoulder, that may at times give you nausea. I have had something similar irregularly, usually in or after a period of having been too busy or of (hidden) stress.
Hence, I would recommend to ask your go to view this pain and nausea independently. Or maybe visit a physiotherapist?
I really would like to help you more. But (1) I am not a medical doctor and (2) I don’t know you hence cannot observe or examine you. Please see your gp and/or a physiotherapist.
Thank you for your reply. I think you might be correct about various issues. Joolsg re;plied to say she thinks i am suffering from opioid panic attacks whilst the body gets used to the buprenorphine.
I will see if my symptoms settle when i get back to totally patches (15mcg) tomorrow and then see GP and/or physiotherapist
Sounds wise, Davchar. I am not saying the shoulder pain IS independent of the buprenorphine, but that you should consider it might be. Personally I never have had ache or anxiety on the buprenorphine. We are all different!
I hope you don't mind but I just want to discuss where I am up to on stabilising my long term mediation. Joolsg some time ago told me it would take several months to "escape from augmentation" and settle on a medication programme. It is now 5 months since I came off DAs completely.
In the last couple of weeks I have gone back to buprenorphine 15mcg/hr weekly patches (ie 0.36mg per day) in an attempt to reduce the nausea which seemed to have increased with tablets (@ 0.4mg per day) The tablets were also affected (making sore) my tongue.
After a calculated switch plan I am now 4 days into my first 15mcg patch and nausea is still very bad during night and early morning. I also feel tired and generally lacklustre despite sleeping reasonably well. At the same time (ie 2/3 days ago i reduced my pregabalin from 50mg per day to 37.5mg/day in an attempt to improve my balance. I am told that pregabalin does affect a person's central motor (in movement) control and I am trying to reduce it slowly but completely.
On average do you find that the bupre patches last more or less than 5 days from initial placement. Incidentally I have bought some simply water proof patches to cover that bupre patch when i shower
I have taken your advice and booked an appointment (March 4th) with a physiotherapist to investigate the shoulder blade pain.
Dear Davchar, some things I cannot predict for you, as we are all different. Ad to the nausea, that sounds difficult to handle, although you write you sleep reasonably well. It maybe worth asking your gp to temporarily prescribe something to help with the nausea. I know Joolsg used cannabis, but other people write that Zofran may be effective and generally doesn’t worsen RLS. I have no personal experience with nausea on buprenorphine (or any other medicine).
As to the length the patches work: it should be 7 days, and for me they usually do, although coverage during the last night (of the 7) may be a little less. When I put on an mee patch, I do leave the patch from the previous week on for a few more days. Just to make sure. I don’t k ow whether it makes any difference to removing the old patch.
Some people do report that their patches didn’t last the 7 days, but only 4-5 days. Whether that applies to you, I can’t tell. You just have to wait and see. You may want to experiment a bit with wjere you put the patch. I usially put one on my shoulder/blade and I alternate sides.
Finally, there is no need to cover the patch extra when you take a shower. Actually, the glue from the waterproof patch may interact with the buprenorphine patch and make it stick less effectively than when you don’t cover it. That in turn may affect the release of the medicine and hence its effectiveness. Please check the leaflet with information that comes with the patches.
I realise that you don't have any specific problem with the nausea that i get with buprenorphine but i would appreciate it if you could comment on my current dilemma
I am struggling to get my head around why I am getting severe nausea from the medication regime that has worked very well and blocked my RLS. for past month or more. My current stable meds are:-
+25 mg pregabalin tablet (taken about midday daily)
1x Kwells tablet each night before sleep
1x Cetrizine tablet before bed (to try reduce "sweats" but unsuccessful)
Last night the nausea was so bad that it woke me about 2am and after that I got very little sleep because of it (not RSL). By nausea I mean a gut feeling that makes me take deep breathes to remove and only seems to come on when I am lying down.
Could it be that the patch which had been in place for 4 days had partially expired and I was having a mini opioid withdrawal problem? I must repeat that I did not experience any RSL symptoms and therefore it seems that RSL for me is blocked at 0.36mg/day?
Have you heard that pregabalin offsets the the insomnia caused by an opioid? Whilst I am reluctant to increase the pregabalin do you think i might have reduced it too much and that the opioid is causing the insomnia or perhaps I should take the pregabalin late evening?
I am sorry to bother you but any comments would be appreciated and might help me decide what line to take.
I am indeed not specifically knowledgeable about opioid-induced nausea. However, I don’t think it is mini-withdrawal. It does sounds like a side effect from the buprenorphine that doesn’t seem to settle. Have you tried to discuss with your doctor to add something to curb the nausea? Ondansetron (brand name Zofran) is a nausea medicine that doesn’t worsen RLS. No-one wants to add yet another medicine to your cocktail, but I imagine the nausea is quite unsettling. Otherwise another option is to try to switch to another opioid, preferably methadone to see whether that one doesn’t give you nausea.
Do talk to and work with your gp! There is a US website/organisation specifically for questions around RLS medications. Maybe your gp could contact them? My neurologist for example contacted dr Buchfuhrer several years ago and found that really helpful. I’ll hunt down the website and post the link. Joolsg has done so in the past.
I apologise for bothering you but I thought I would let you know where i am up to on buprenorphine in the hope that you might have some "ideas".
After a tough last few weeks with visits to GP and physio I have reached the following point:-
-The neck/shoulder pain is under control from physio and independent of buprenorphine side effects
-because of a miscalculation by GP on different absorption rates between tablets & patches (ie divide by 60 to get equivalent dose) I was taking too much buprenorphine.
-I have now settled (same as you I remember?) on a weekly 5mcg/hr patch which seems to be doing its job after 4 days and counting. I do not intend to overlap but just change after 6 days (on advice of GP and other forum members) as a danger of overloading system with buprenorphine.
-I still have severe nausea at night and early morning together with hot & cold sweats immediately after breakfast despite having taken Zofran for 2 or 3 days
-I do not get RLS when sit for a period or in bed but the nausea is a problem with sleep.
I'm fairly new here and still trying to figure things out. I had the impression, though, that long-term use of Pregabalin would be a much better outcome than long-term use of buprenorphine for most people. Is that not true? Maybe that is based on the general fear about opiod use? I have been assuming that I would just need bup for the month or two transition off pramipexole to pregab, then plan on finding the apppropriate level for ongoing pregab dosage. What are your plans if you stop the pregab and just rely on bup - is that a short-term situation until dopamine receptors are back to normal and then re-start pregab? thanks for sharing.
You will probably get a more detailed answer from the more experienced people on the matter but basically as I understand it.
Both Buprenorphine and Pregabalin are basically pain killers which form a barrier to RLS when a person's dopamine receptors have been " damaged" by excessive prescription and use of Dopamine agonists (DAs).
After augmentation has been identified it is a matter of finding a mixture of opioids and alpha2 delta ligands (eg pregablain or gabpentin) to sustain the sufferer until the receptors recovery. it could of course be that the receptors never get back to full "efficiency" and hence the brain's dopamine system never totally recovers. if this is the case there will always be a need for some form of "barrier" to RLS and then it is again personal experimentation to see what formula works best for the individual whilst balancing the side effects of each medication.
In my case I hope that when my "escape from augmentation" is complete (may take several months) I am happy to continue with a small dose of opioid as pregabalin has given me problems with balance, and weight gain as well as other lesser issues. Oxycodone/Naloxone didn't work for me but Buprenorphine seems so far to (fingers crossed) to work for me without any unbearable side effects. I agree the general fear of opioids is a factor in this equation.
I hope this is helpful and if you get anything more detailed please let me know
It can be hard to get a prescription for an opioid and often friends and family who do not understand will think and sometimes even accuse one of being an addict.
very helpful - thanks. That all makes sense if the original underlying cause of RLS was iron deficiency or some other temporary condition. But I think the cause of RLS is often not really understood, right? I’m with you on preferring Bup to pregab for a long term solution- based on the ten pounds I’ve gained. But it would take some major arm twisting to get my doctor to agree to long term opioid use.
Correct nobody seems to understand the underlying causes as to why the dopamine system gets out of sync but if you can find the link (on this forum) to Dr Earley's ( from a USA institute) paper he explains what happens when it does and his method of getting the receptors back to normal.
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Reintroducing DA at a low dose?
And now for the good news
DA Augmentation, foot pain & Opiods.
