Escape from Augmentation part 2

[davchar23]

I have been excellently helped by several forum participants in my "escape from augmentation" and am now at a stage where I need to report my story and ask another question going forward:-

I would like to ask for comments on my current situation.

I am writing this note having been awoken by nausea at 4am and unable to sleep since then as a result.

It is 6 months since my last DA use and during that period I have tried several roads to achieve a steady meds situation. Most were dead ends but my present use of buprenorphine patches (5mcg/hr) supplemented by an occasional as needed 200mcg buprenorphine tablet has successfully blocked off RLS. Whilst this is wonderful I still cannot get a good night's rest because of the resultant nausea for which I have in vain tried Quells. Ginger, and finally Zofran.

Can anyone recommend any other anti-nausea drugs please?

When the nausea strikes I have to get up and walk around but even then it does not disappear completely and after say an early breakfast I have hot/cold sweats. The nausea seems to gradually subside as the morning progresses and by early afternoon I am free of RSL & nausea.

I seem to have only one route left open to me ad that is medical cannabis which i have to admit I am reluctant to start

I would appreciate any supportive comments

Davchar

[ChrisColumbus]

How long have you trialled ondansetron (Zofran) for? I know that it's supposed to have some effect immediately, but perhaps it needs time to build to counteract the buprenorphine? I think that Joolsg suggested that it could take 10 days to overcome the nausea effects: I'm not sure whether that applied to Zofran or medicinal cannabis or both...

As far as medicinal cannabis goes, NICE advises: "A specialist doctor will need to prescribe cannabis-based medicines to start with. They should give you clear information about the benefits and harms of the medicine, any risk of dependence and explain how it may affect you. They should listen carefully to your views and concerns." Is this any reassurance?

[davchar23 in reply to ChrisColumbus]

Dear ChrisColumbus,

Thank you for your reply. I have only had 5 days of Zofran prescribed by my GP and so i will ask him either to extend the trial or prescribe an alternative.

Thank you for your reassurance on medical cannabis

Regards Davchar

[Joolsg]

bicyclehealth.com/suboxone-...

Most articles state that nausea associated with Buprenorphine usually disappears after the first 10 days as your body gets used to the drug.

You are still experiencing it.

As ChrisColumbus asked, how long did you take zofran? You have to try it for at least one or two weeks.

I'm sorry that the side effects are so unbearable. Especially as it stops ALL your RLS.

One final thought, perhaps try a cetirizine anti histamine at night before bed. The non sedating anti histamine might reduce histamines, which can cause nausea. It's worth a try before the expense of medical cannabis.

[davchar23 in reply to Joolsg]

Dear Jools,

My GP told me that I would know if Zofran was effective after 2 days and he only prescribed 5 days supply which i have completed.

I did a while ago try cetirizine but I will try again just in case i didn't give it long enough.

One of the issues I don't understand is why the nausea is much worse when in bed or dozing in a chair

Best regards

Davchar

[davchar23 in reply to Joolsg]

Dear Joolsg,

I hope your mother is ok as i noticed in one of your posts you said you were away?

Zofran has not helped my nausea and now in my 8th day of use I have another 3 days supply

In an attempt to reduce the very severe nausea i seem to be experiencing from the use of Bupre patches I decided try try sublingual tablets again and removed the 5mcg/hr patch. Instead on the first and second nights after removal I took just one 200mcg tablet result no RLS but still severe nausea. Last night as I felt RLS breaking through I took a second 200mcg tablet on getting into bed but the total of 400mcg did not stop RLS getting through and I have now had to take a third tablet to see if the 600mcg (equivalent to a 10mcg/hour patch ) will get me back to square one! it is 2-30am and i also think i am experiencing opioid withdrawal as getting alternate hot/cold sweats.

Do you think I am analgising the situation correctly? Can you suggest my next move? I have doctor's appointment on Tuesday afternoon and will ask him about alternative anti nausea drugs eg naltrexone etc. I will then have to reluctantly think about cannabis . I am also taking slightly more pregabalin to help with anxiety/depression and am back at 50-75mg/day.

I would appreciate your comments

Davchar

[Joolsg in reply to davchar23]

I'll reply to your main post Dav.

[Joolsg in reply to davchar23]

I have been looking after my mother to take over from other family members. No WiFi and mobile reception poor.

[707twitcher]

Did your doctor suggest other medication possibilities if the Zofran didn't work? There are some OTC options like Emetrol, Dramamine & PeptoBismol, plus other Rx options. Zofran is generally considered one of the best, but as we've all found here, everybody reacts differently to medication. I'd suggest visiting the pharmacy for some OTC options - it can't hurt to try a few. Just to clarify - it's nausea, not cramps or a burning feeling (stomach acid), right?

[davchar23 in reply to 707twitcher]

Dear 707Twitcher,

Thanks your reply

No I have asked doctor to do so and awaiting a reply but I suppose I could go directly to my pharmacy.

I asked Alexa to describe "Nausea" and what she said matches my symptoms which are not cramps or stomach acid. it is very uncomfortable feeling of sickness in stomach which eases with deep breadths.

Davchar

[davchar23 in reply to 707twitcher]

Dear 707twitcher,

Zofran has not helped my nausea and now in my 8th day of use

In an attempt to reduce the very severe nausea i seem to be experiencing form the use of Bupre patches I decided try try sublingual tablets again and removed the 5mcg/hr patch.Instead on the first and second nights after removal I took just one 200mcg tablet result No RLS but still severe nausea. Last night as i felt RLS breaking through I took a second 200mcg tablet on getting into bed but the total of 400mcg did not stop RLS getting through and I have now had to take a third tablet to see if the 600mcg (equivalent to a 10mcg/hour patch ) will get me back to square one! it is 2-30am and i also think i am experiencing opioid withdrawal as getting cold alternate hot/cold sweats.

Do you think I am analgising the situation correctly? can you suggest my next move? I have doctor's appointment on Tuesday afternoon and will ask him about alternative anti nausea drugs eg naltrexone etc.

Kind regards

Davchar

[707twitcher in reply to davchar23]

It’s good that you are seeing your doctor tomorrow. No, I don’t think you’re experiencing opioid withdrawal. More like too much opioid. I believe the symptoms are the same for both? If the 5mcg patch was controlling your RLS, that is the equivalent of taking 300mcg in pill form. You doubled that with 600mcg, plus you had residual buprenorphine in your system from the patch. It will now likely take several days for all this to leave your system. At this point I’d ask your doctor about trying a different opioid, like methadone, after waiting a few days of no buprenorphine.

Sorry this is such a struggle for you.

[davchar23 in reply to 707twitcher]

Dear Twitcher707,

Sorry for my delayed response as your email for some unknown reason went into my spam file.

I must admit to being a little confused as to my condition! I am unsure whether I have taken too much bupre or am in withdrawal.

I had not read your reply when i went to bed last night (ie 10 hours ago without any nausea) and I put on another 5mcg patch ( I feel there is less nausea from patches). It blocked RSL and allowed a reasonable nights sleep but by 8am this morning (2 hours ago) I had very severe nausea and have not been able to take more than a very light breakfast. The nausea is slightly better now but I was considering taking another single 200mcg to top up the 5mcg/hr patch. I did NOT.

My logic for the extra tablet was that I believe I need somewhere between 5 & 10mcg/hr to block RLS. I will follow your logic that I still have enough Bupre in my system from the early episode. Do you think by my bedtime tonight (in another 12 horses time) that I should take one 200mcg sublingual on the basis that 5mcg is not enough alone. I will of course ask the GP the same question at the same time as asking him to suggest an alternative to buprenorphine ie methadone. Incidentally have you heard if anyone gets nausea on methadone?

I appreciate your help and concern

Best regards

Davchar

[707twitcher in reply to davchar23]

Well, I think your experience from last night shows you don’t need much buprenorphine for RLS control. I believe, based on what I’ve been able to read, that the good effects of buprenorphine (RLS relief) have a shorter effective life than the side effects (nausea for you) - maybe 10 hours vs. 30+ hours. Coupled with the fact that you had minimal buprenorphine in your system having just applied a patch at bedtime and I wonder if even a 5 mcg patch is too much buprenorphine for your RLS needs (at least some of the time)?

If the doctor concurs, my suggestion would first be to try something different like methadone. Otherwise,I would stick with the 5mcg patch and if you ever have to supplement it for breakthrough RLS, never use more than 1/2 of a 200mcg pill. Maybe your RLS fluctuates, but we know that the nausea is a constant side effect for you and gets worse with increased dosage. Your constant switching the dosage probably has your body pretty confused at this point, so I would think you need to stabilize for a couple weeks before doing anything else (dosage changes) if you stay on buprenorphine.

I don’t recall your experience with gabapentin/pregabalin. You must have not had success with them and that led you to opioid use? If you can’t find an effective nausea cure, I would sure try to find an alternative to buprenorphine.

[davchar23 in reply to 707twitcher]

Dear Twitcher707,

Thank you for your reply and patience. I tried to send a reply earlier but i think I somehow deleted it and therefore i will try repeat my plan after today's GP appointment. i am luck in that my fairly young GP seems to be prepared to "research" RLS and it's side effects.

Firstly I think that Joolsg and you are both correct in that I have confused my body with switching from tablet to patch etc and i agree it is difficult to determine exactly ones limit or needs for buprenorphine.

My GP wants me to continue with Zofran for another week despite his own experience in surgical work which says it does not need so long. He also wants me to continue to use buprenorphine and to trial other anti-nausea drugs before looking at alternatives. he will not prescribe methadone.

He asked if our site had discussed any other not (OTC) anti nausea drugs. You names me some OTC but do you know of others not OTC please?

So tonight it is the existing 5mcg/hr patch and if necessary one or part of a 200mcg tablet as you suggest.

My GP and i cannot answer the question as to why the nausea is worst early each morning(it wakes me) but by now 1-pm it is zero. ? Any thoughts on that please?

I had my ferritin level result after 3 months on iron bisglycinate today and it was 91 so GP told me to continue with iron treatment which i stopped when buprenorphine seemed to be giving me nausea.

On pregabalin etc i tried up to 600mg/day but no effect on RLS but a lot of balance problems.

I will let you know how it goes

Kind regards

Davchar23

[707twitcher in reply to davchar23]

My thoughts:

1. No idea why the timing of your nausea is what it is. With a fairly constant release of medication from the patch, the level of buprenorphine should stay the same. It must have something to do with the body's circadian rythm/internal clock?

2. For anti nausea drugs, I have no experience to relate, but use the "Search HealthUnlocked" bar (top of page) and type in "anti-nausea medication". There is a one-year-old thread started by Jumpinglegs where several people provide their recommendations.

3. It's possible that you didn't give pregabalin a fair try, given that it takes some people significant time after stopping DAs to restore dopamine receptors. It might be worth trying again at some point. I'm personally going to try again. That process takes a while. I know the regimen for gabapentin is to take 300mg daily for 3 weeks (it takes that long to start working), then start ramping up from there 100mg at a time every couple days until you find a dose that works. A lot of posts from Sue and others talk about the equivalence of gabapentin and pregabalin (just multiply gabapentin dose by 6 to get appropriate pregabalin dose). I didn't like my weight gain on pregabalin (plus I didn't take it long enough to really see if it helps my RLS), so I'm going to try gabapentin. If you were taking 600mg of pregabalin, that is a very high dose. How long were you on it?

Good luck! Glad your doctor listens and is trying to learn.

[davchar23 in reply to 707twitcher]

Not sure what i have done tonight but as i said I took one 200mcg tablet at 11pm and now 1pm have severe RLS yes RLS! cannot understand it or even apply any logic but am so disappointed that my "plan" started so badly. Any ideas?

Sorry i will reply to your thoughts on gabapentin later when i get past this hurdle. you may be right though and i could try again but at the moment why RLS. and no nausea I have had a 5mcg/hr patch on for two days + one tablet tonight(perhaps i should have used half?

Davchar23

[davchar23 in reply to 707twitcher]

Dear twitcher707,

Cannot sleep again(!) so i read you reply on gabapentin and pregabalin again.

I think you got the conversions wrong? to get from gaba to pregaba you DIVIDE by 6 so 6oomg/day pregaba is 2400mg/day gagapentin?

Yes the 600mg/day pregabalin was about the maximum my neurologist would accept but did not alleviate RLS enough and really affected my balance too much never mind weight gain. I cannot remember how how i stuck it out with a 200mg tablet three times a day.

i haven't checked but am I right or not on conversion?

Davchar23

[707twitcher in reply to davchar23]

Yes, you’re correct. I had it reversed. If your pregabalin trial was within a couple months of stopping your DA, the timing may have been wrong (damaged dopamine receptors). If you didn’t stay on it for at least 6 weeks, it may have been too short. But the dose definitely seems excessive. Gabapentin might sit better with you, but you certainly don’t want to take 3,600 mg😱. If it does make sense to retry it, I’d take it slow, increasing from 300mg up to a maximum of 1,800 over several weeks. And I’d take it all at bedtime. See Sue’s advice about how to time the doses when you are taking more than 600mg.

It’s really puzzling that you had no RLS last night, having just put on a 5mcg patch, but you have it tonight with a more effective patch and a 200mcg pill. I assume you have ruled out triggers being the cause - medications, food, alcohol, etc? In your past instances of needing to take an extra pill or two, has it always succeeded in stopping the RLS? Have you ever had to take more than 2 pills? I understand wanting the RLS to stop, but I do wonder if you’re in this vicious cycle of occasionally needing more buprenorphine, but when you take it, it doesn’t help and makes things worse.

I come back to thinking you need to stabilize your buprenorphine usage for a couple weeks.

What you really need is a more knowledgeable doctor that can advise you - I think your situation is unique.

I don’t recall what your reaction has been to suggestions of using cannabis? It helps a lot of people with nausea, and helps a lot (including me) with RLS symptoms as well.

Think of the book you can write if you survive this ordeal😄.

[davchar23 in reply to 707twitcher]

Thanks your reply and no I cannot think of any such triggers unless it was my normal 20mg atorvastatin or a return to iron bisglycinate after my GP reported I had only managed to get to 91 ferritin level?

I agree about need to stabilise level and type of buprenorphine and i will of course try harder now

It is now nearly 4am here so hopefully RLS will ease and it will be interesting to see if nausea returns as currently zero.

You are right about the book. At the beginning of my RLS story i bought a book claiming to be the font of all knowledge on the topic. i look at it now and it is mainly a fairy tale.

Joolsg has repeatedly suggested cannabis to me and i will certainly look into it again

I will give your pregabalin ideas more attention later if i may as now a bit tired

Davchar23

[707twitcher in reply to davchar23]

Atorvastatin is a notorious RLS trigger. I’ve tried taking 10mg 3 times a week, and even that sets my RLS off. It also has a long half life, so it stays in your system a few days.

There have been prior posts talking about statins. Not sure if there are any that don’t set off RLS. I’d recommend stopping it. You’re far more likely to die from lack of sleep than high cholesterol. I’d be shocked if your RLS isn’t much better after you’ve been off them a couple days. Maybe you can even cut back on the buprenorphine. Stay on this 5 mcg patch, but if you get no breakthrough episodes for a while, maybe try cutting a patch in half or try a 200mcg pill every other day (no patch).

[davchar23 in reply to 707twitcher]

Good morning and thanks your support

I had very little sleep and got up about 6-30am due to nausea. RLS weakened and stopped about 5am but then the ankle pain which i get from statins tripped in. This pain lasts for only a few minutes and is easily "walked off" and is something that i do not get every morning but about once a week.

I know that Statins are a RLS trigger BUT i have been taking them daily for years and in fact had a 3 month without trial, agreed by my cardiologist , to see if it affected my RLS and it did NOT appear to. I agree that better to risk high cholesterol than no sleep and i will discuss again with cardiologist. I had a triple by pass in 2016.

This morning is just the same in terms of nausea and cold sweats.

I would like to try to see if a higher pregabalin dose "works" and in fact Joolsg had also suggested to up the dose in case I could eliminate opioids eventually. However i have enough"going on" with the nausea "tests" at moment so will follow my current plan.

Tonight and next few nights I will not take a statin , nor a "top up" tablet and see how it goes. I have only got one Zofran tablet left so there will be a gap in that test until i get to pharmacy.

Kind regards

Davchar23

[707twitcher in reply to davchar23]

Two points:

- if your prior trial without statins happened before stopping the DA or before starting buprenorphine, the results might be different now. I found that my RLS triggers have changed dramatically since I stopped Pramipexole and started buprenorphine.

- if the stoppage now does help your RLS, that might mean that you should switch to a PCSK-9 blocker. I also had a triple bypass (in 2020), and that’s what I use. It’s far more expensive, so insurance here wanted me to try several different statins, and have them fail because I couldn’t take the side effects, before authorizing Repatha that I’m now on. It’s very effective at lowering cholesterol. It’s a self-administered jab every other week. So that might be something to pursue with your cardiologist.

And curious about your comment about upping your pregabalin dose? Didn’t you say you were at 600mg? That’s very high for pregabalin (low for gabapentin).

[davchar23 in reply to 707twitcher]

Tks your reply with two points.

My trial without statins was after DA augmentation and before buprenorphine so you could be right lets give it another try. i have never heard of a PCSK-9 blocker. i will bear in mind.

Yes I briefly went up to 600mg/day (3x200mg) of pregabalin on advice of neurologist. I found very little benefit and a lot of negatives especially balance and weight gain I then took a great deal of time slowly trying to rid myself of Pregabalin to try get my balance back to something safer. Just before i started all the trouble on nausea, ie recently, i got to 25mg per day and hoed to make it zero when Jools g said to me that i ought to consider pregabalin as opposed to opioids if my receptors recovered sufficiently.. I am now on 50mg/day which Jools says is similar to her use for stopping the anxiety & depression caused by opioids. i did at one time try gabapentin but I cannot remember at what dose.

When one talks about "triggering RLS" what does this actually mean because the opioid acts as a blocker once something is triggered? Sorry if i sound confused as i am a chemical engineer not a chemist by profession. I have asked Joolsg the same question ie does the "triggering" item affect the dopamine regime and hence knock the opioid off the receptors? I will let you know what she answers in due course.

Kind regards

Davchar23

[707twitcher in reply to davchar23]

Use the search bar with "statins RLS" and you'll find some posts mentioning alternatives to consider. I think PCSK-9 inhibitors are likely the best choice, but they aren't well-known and their cost might make it difficult to get a Rx.

The fact that you are on 50mg of pregabalin means you have a head start if you want to try ramping up again eventually to see if it might work now that you've been DA free for a while. That's the equivalent of 300mg of gabapentin. You may want to switch to gabapentin at some point (not till things settle down for you) just to see if you do better with it than pregabalin.

I'm certainly not a chemist either. Given how little is understood about the causes of RLS, I don't know if anyone can really explain what happens with dopamine levels, oxygen in various parts of the brain, etc. For me, triggers (statins, caffeine) result in RLS symptoms that generally are handled by taking more buprenorphine (or cannabis). Just look at the wide range of dosage for any of the opioids or pregabalin/gabapentin that it takes for different people to control their RLS. It takes some people 10 times more medication than others to control symptoms. This would seem like a good thing for someone to study...

[davchar23 in reply to 707twitcher]

Good evening and thanks information. It is nearly 10pm here and i am just starting to feel some RSL in my feet. I currently have a 5mcg/hr patch in place (3 days old) but have not taken any tablets since last night. I suspect that either the patch is not working up to its expected efficiency or else has run out. i am considering adding another 5mcg weekly path alongside for just another say 24 hours OR as last night using a 200mcg tablet. What do you think?

Kind regards

Davchar23

[707twitcher in reply to davchar23]

I think it’s highly unlikely the patch has run out or lost effectiveness. It just doesn’t seem to be strong enough for you on some days. I’d just take a pill. The patch should be fine for 5 or 6 days before adding a new one. Maybe one more day off the statin and the RLS might lessen. Otherwise supplement with a pill as needed. I’d try to avoid taking two pills if you can.

[davchar23 in reply to 707twitcher]

Dear Twitcher707,

I am sure your are correct in that I have confused my body with my attempts to "cure" my RLS associated nausea

i think that in trying to get the nausea under control i have lost sight of the key objective ie to block RLS. i suspect in the early days of my use of Buprenorphine i needed between 10 & 20 mcg/hr patches to block (ie 0.24 to 0.48mg/day) I remember exchanging information with you as to how long a patch lasted and that the patch didn't start to "work" for up to 24hrs after fitting? Then changing to tablets to try get a better idea feel for how much Buprenorphine I needed. Then reducing amount to try alleviate nausea.

Basically I do not believe I have ever reached a point of knowing what my stable meds are! After a bad night last night i have just had a 5mcg/hr weekly patch on all day (2 days into it's "wear". When RLS started abut 8pm i took half a 200mcg tablet. no effect by the time I went to bed at 10-15pm so i took the other half and I am currently (midnight) thinking about taking another half a tablet.

If we assume that a 2 day old 5mcg patch is fully effective and therefore my blood will have at least 0.12mg of bupre built up plus 1.5 x200mcg (ie 0.3mg)tablets that should give me a possible 0.42mg currently present and perhaps not quite enough if original requirement was 0.48mg/day?

So I going to have to restart my plan B to stabilise my meds and would appreciate any comments on above please. So tonight I am hoping that I will get through with 5mcg/hr patch plus 1.5X200mcg tablets Kind regards

Davchar

[707twitcher in reply to davchar23]

The patches start to work immediately, but the effectiveness builds up over the first day to maximum effectiveness on Days2-4, with a slow decline from there. A lot of people add a new patch after 5 days, for me it’s 6. Maybe plan on putting on a new patch every fifth day in the afternoon; leave the old one on until the following morning, then remove it. This overlap should compensate for the lower effectiveness on days 1 and 5.

The 5mcg patch is equivalent to 300mcg in pill form. So keep the patch on and take whatever you need in pills to control the RLS. If you are able to stabilize, then you’ll know what dose you need. For instance, if it takes you 2 pills plus the patch, then you need the equivalent of 700mcg. A 10mg patch provides the equivalent of 600mcg, a 15mcg patch would be the equivalent of 900mcg in pills. Note that these numbers are different than just multiplying the patch dosage times 24 hours. Because of the absorption differences, you basically divide the given sublingual (pill) dosage (say 600mcg) by 60 to get the equivalent patch on a per hour basis (10 in this example). That’s why I converted everything into a sublingual amount and then convert that back when dealing with a mixture of both. I hope that kinda makes sense.

Your RLS does seem to fluctuate in severity. I don’t know what that means for treatment. If the side effects didn’t bother you so much, I’d say just stick with the pills and take more when you need more. But trying to minimize side effects via the patch complicates things. If you can’t find a knowledgeable doctor who can steer you better, I’d be inclined to stay with the 5mcg patch for a few weeks and takes pills as you need them. Hopefully your body can give you clues as to whether you need a half pill or one or two. Maybe start with one full pill on the theory that if you need something (i.e.,, your RLS is flaring) you will likely need at least a full pill, maybe more.

I do feel like I’m practicing medicine without a license 😱. Your situation seems unique and I wish you could find a knowledgeable doctor. But I think a lot of us are in a similar situation.

So, you’ve been off the statins now for 3 days? Any noticeable impact on the RLS? It might take a little while longer.

[davchar23 in reply to 707twitcher]

Thanks for reply and please don't concern yourself about "practising without a license" ....you are simply relating your own experience and research. This facet of a topic is crucial especially with something like RLS where the medical profession is, at least in UK, burying it's head in the sand.

I don't think I am in any way unique. What i think has happened is that I have not being patient enough with my various changes of "meds" and have confused my body workings.

Going back to measuring mcg absorption rates. I assume that your statement that a 10mcg patch provides the equivalent of 600mcg and not 240mcg in a day is taken from the absorption charts i remember you posting sometime ago? Therefore to calculate ones daily intake is not really much of a "marker" and the only way to try achieve a stable rate or a rate to give a constant RLS barrier is to use small portions of table to build up the barrier as necessary.

I tend to work on a tablet taking about 1 hour to be effective... would you agree?

Currently after my post last night (ie 9 hours ago) I had used a 2day worn 5mcg patch and 1.5 x300mcg tablets. I had a reasonable nights sleep until nausea woke me about 7-30am. I will now stick with that strategy as plan B!

I did not take a statin for a 2nd night and will stop my 20mg per night of Atorvastatin for say another 2 or 3 nights before restoring it and monitoring RLS accordingly.

best regards

Dav char

[707twitcher in reply to davchar23]

I view the 60:1 ratio as just the way to compare effective dose of sublingual (pill or strip) to patch. Since with sublinguals the effect is fast (your 1 hour window is fine; can be a bit less for some), and lasts for about 10 hours at that effectiveness, that is just for me a better barometer of underlying dose requirement. And it’s easier to titrate. Once you have a feel for overall dosage requirement, you can convert that to what size patch supplies that equivalent amount using the 60:1 conversion.

Because Atorvastatin has a long half life, starting or stopping it will be similar to buprenorphine in that it likely takes several days to stabilize going either direction. (I hadn’t even thought about whether there could be withdrawal effects from stopping it?😱.)

[davchar23 in reply to 707twitcher]

Thanks your reply.

I had a reply from Joolsg and she is adamant that I shouldn't confuse the body with a "top up" situation and should now go onto "plan C" which is to use tablets full time until a steady dose is found and thern worry bout nausea. This sounds similar to your plan to to get "a feel for the overall dosage requirement" and then use appropriate patch.

Therefore we you go along with Joolsg proposal at this stage?

I will leave off the statin for a few more days but cardiologist will be upset even allowing for your comment on age versus addition!

Kind regards

Davchar23

[707twitcher in reply to davchar23]

I personally think it's the constant changing of dose that's a problem, and that if you stay with the 5 mcg patch (every 5 days) plus one to two pills as needed, that would enable you to stabilize. However, Joolsg has been far more involved with this, for far longer, than I have been. So I defer to her judgment. Sounds like she also believes you shouldn't always top-up with more once you find a baseline. Given your nausea issues, that makes sense.

I will say that my main side effect (constipation) is much worse on the sublinguals (suboxone strips for me) than on the patch. I'm in a situation now where my insurance company is balking at the last refill of the patch, so I have been back on sublinguals for 5 days after being on the patches for 5+ weeks. It has been an awful week, even taking constipation remedies. I believe the difference is simply due to the higher dose of buprenorphine in my body with the sublinguals (400mcg vs. 7.5mcg patch). Your side effect (nausea) sounds worse than mine, and your reaction to the sublinguals vs. patch may be different than mine. But if your reaction is similar to mine (worse with more buprenorphine), then I would opt to try stabilizing on the patch - whether that is 10mcg, 15 mcg or? Unfortunately, it's much harder to titrate with the patch and it takes a day or so longer for the new dose to take effect. But it sounds like 5mcg is clearly not enough. What was your prior history of patch dosage? How much for how long?

I hope you are keeping a log detailing what your med usage has been every day and your symptoms?

Maybe you should switch to a new post for this ongoing thread so the responses are easier to follow ? Maybe call it Stabilizing buprenorphine dose or something like that? You could start it off with a summary of what your various buprenorphine doses have been over time.

[davchar23 in reply to 707twitcher]

At the risk of over simplifying the issues it seesm to be a matter of either (a0 change of dose or (b) change of application media.

I think you are right...I will start a new post .. please watch out for it later!

I did not notice any difference in the usual constipation issue between parch and tablets. i use both docusate and lactulose to counter this and whilst not perfect they help.

Watch for new post kind regards

Davchar23

[LotteM in reply to davchar23]

I second Twitcher. Add a pill, or even half a pill at a time. They work fairly fast and this way you can tweak far easier than by adding (or removing) a 7d patch. And don’t aim for 100% rls symptom free, see if you can walk it off and sleep into the morning for a while - if needed. Or get an extra nap around noon if you can.

Jools also recommended to you not to play around with medicines and doses too much. Stick with your current patch, and inly top up with sublingual pills if you really need it. Distraction also can work wonders. And have you ever tried a midnight coffee? I can’t recall the details, but it plays on the adenosine system and can actually help during an attack.

[davchar23 in reply to LotteM]

Lotte,

I tried a couple of hours ago not to take anything except the current 5mcg patch and I have just come through what was either the most awful RLS or may be opioid withdrawal period. i was shaking arms and legs and could not walk it off. i of course took a full 200mcg tablet and now after a small snack and 20minutes relaxing I feel worth a try to go back to bed.

Thank you for your support and caring

Davchar23

[LotteM in reply to davchar23]

That sounds indeed like withdrawal. Coupled with breakthrough RLS. I hope there was no nausea as well? As that is usually when you it occur in your situation, isn’t it? I recognise the relief.. Next time, try half a pill. Get a pill cutter from your pharmacist and have half-pills ready for the taking

You may need to come off the buprenorphine totally. And, yes, I know, that is easier said than done. Most likely you will have to switch to pills (which allow better finetuning because of their shorter life) and then very gradually reduce. Don’t do this on your own. Describe to your gp what you experienced (keep a log, try to fill it out for the last days/weeks too to the best of your knowledge) and ask for help.

So terribly sorry this seems to be escalating. You really need good help. Do you have someone close (a child, a sibling,a good friend), nearby to support you in a more practical way? You may need that, as the bad nights and constant struggle will wear you out. As here, we can only listen and advise, and it sounds you need a little more.

[davchar23 in reply to LotteM]

Dear Lotte

Thank your for your kind repy.

i think that in trying to get the nausea under control i have lost sight of the key objective ie to block RLS. i suspect in the early days of my use of Buprenorphine i needed between 10 & 20 mcg/hr patches to block (ie 0.24 to 0.48mg/day) I remember exchanging information with you as to how long a patch lasted and that the patch didn't start to "work" for up to 24hrs after fitting? Then changing to tablets to try get a better idea feel for how much Buprenorphine I needed. Then reducing amount to try alleviate nausea.

Basically I do not believe I have ever reached a point of knowing what my stable meds are! After a bad night last night i have just had a 5mcg/hr weekly patch on all day (2 days into it's "wear". When RLS started abut 8pm i took half a 200mcg tablet. no effect by the time I went to bed at 10-15pm so i took the other half and I am currently (midnight) thinking about taking another half a tablet.

If we assume that a 2 day old 5mcg patch is fully effective and therefore my blood will have at least 0.12mg of bupre built up plus 1.5 x200mcg (ie 0.3mg)tablets that should give me a possible 0.42mg currently present and perhasp not quite enough if original requirement was 0.48mg/day?

So I going to have to restart my plan B to stabilise my meds and would appreciate any comments on above please.

Kind regards

Davchar

[Birdland]

Just want to inform you of my experience with zofran. I took the tablets for quite a while but they didn't work well on my extreme nausea. A friend brought over some of the sublingual zofran for me to try. I dissolved one under my tongue and found them to work much better. Now I make sure the doctor prescribes the sublingual.

[davchar23 in reply to Birdland]

Dear Birdland,

Thank you for your useful reply. Could I ask you if your severe nausea only severe when in bed and not during a normal daily routine?

Regards

Davchar

[Birdland in reply to davchar23]

When my nausea was severe it was all day and night. I eventually had to stop taking any opioids regularly because the nausea was so severe. I do take methadone on occasion. Oh, and to be clear I took the generic form of zofran, ondansetron sublingual.

[davchar23 in reply to Birdland]

Dear Birdland,

I am waiting for my doctor to advise on an alternative anti nausea drug and to get him to prescribe sublingual Zofran.

I have completed the prescription he gave me for 5 days of Zofran and i am currently really struggling with the nausea 24 hours a day (milder during day though). I am currently trying ginger root and cetirizine but so far no joy! I am on such as low dose of buprenorphine already (5cg/hr patch) but i suppose i could cut patch in half as i have 200mcg buprenorphine tablets as back up if needed when RLS breaks through

I wondered if you had any further comments?

kind regards

Davchar

[Birdland in reply to davchar23]

davchar23, I know Joolsg experienced her severe nausea to disappear after an amount of time. I see she states that articles say it improves after 10 days. My experience was different. I have tried many opiates under the the direction of Dr. Buchfuhrer. Oxycodone, Morphine, Methadone, and Belbuca (which I believe is similar to Buprenorphine except they are films that dissolve on the inside of cheek). My experience was such that I didn't experience nausea right away but after a build up of opiates in my system I suffered such horrible nausea that I was in bed for 2 weeks not being able to eat or do anything and lost 15 pounds. I am a small woman so this is a lot for me. This happened 3 times. Each time I had to stop the opiates. I took a large dose of Ropinirole for 16 years and augmented terribly, so Gabapentin did not work for me. Opiates were my only hope but my hopes were dashed. Dr. Buchfuhrer, a leading expert told me there was nothing he could do for me. My neurologist now prescribes Methadone but I save it for extreme times, taking a quarter of a 5mg tablet on occasion. BTW, in general I am VERY sensitive to medication. Fortunately my RLS is nowhere near as bad as it was while augmenting. I watch my triggers very closely and am in a hot bath twice a night and spend time pacing but manage to usually get 5 to 6 broken hours of sleep. I sincerely hope your nausea dissipates so you can carry on with the Buprenorphine. But, back to original issue, I did find the sublingual Ondansetron tabs to work so much, much better. I'm hoping that might be your answer!!!!! I'm keeping good thoughts for you!!!

[davchar23 in reply to Birdland]

Dear Birdland,

Thank you for your support. i live alone and am struggling at moment.

The nausea reached a point last night where simply could not sleep because of it (no RLS) and took off the 5mcg/hour bupre patch. O f course this did not immediately reduce the nausea but I did get a bit of sleep in an armchair.

I have to collect more Zofran tablets today from pharmacy and if RLS comes back(as i am sure it will) tonight i will use one 200mcg bupre tablet to try control both RSL and nausea. i am interested to see if 7 months after augmentation whether my receptors have recovered and hence RSL much less as you found?

I am reluctant to go down the cannabis route and therefore i believe that my next RLS blocker will have to methadone or go back and try a higher dose of oxycodone and sticking with it until the body gets accustomed to it.

Best regards

[Birdland in reply to davchar23]

davchar23, I completely understand your need to remove the patch. Nausea, especially when it is relentless, can be so debilitating. I hope your RLS came back only mildly. It’s unfortunate that our medication options for RLS can come with such difficult side effects.

[Jumpey]

I can't advise on buprenorphine or zofran because I haven't tried them.But just wanted to say that if you can't control the nausea you could try an alternative opioid.Morphine works well for me with no nausea.

[Lespenney]

I am currently going to acupuncture for side effects from methadone that done seem to be going away. I stopped that medication about a month ago.

[Bantamdyno]

Hi, why not try this on trigger points worked for me

Trigger point massager.