Hi, I need help from those who have knowledge and experiences with buprenorphine. You may have known my problems from my past post. I switch from oxycodone 5 mg to Belbuca (Buprenorphine buccal film) 375 mcg with very unpleasant side effects, such as continued thigh muscles and calf muscle ache and weakness and nausea and insomnia. Even with 375 mcg I still experience RLS symptoms during the daytime. Any dosage above 375 mcg would give me severe anxiety and insomnia. I was wondering if 5 mg of oxycodne, a pretty small dosage was able to control my symptoms and why the stronger Buprenorphine cannot. My question for you, if Joolsg or LootteM and Ellfindoe can help with my question. Can I change to another opioid or switch back to oxycodone? Is there any complication from switching back to oxycodone or other opioids. I am desperate at this moment and don't know what to do and don't know which way to go now. Any reply will be greatly appreciated.
unable to tolerate side effects from ... - Restless Legs Syn...
unable to tolerate side effects from Bulbuca
Hi there. Sounds like you’ve never been on any of the DAs? That’s good. Did you start any new meds back in 2016 when your RLS took a turn for the worse? HRT? Metformin? Anyways, take a look at my profile page. The iron not only relieves the RLS, but seems to make me drowsy.
Do you have any other conditions ie hypothyroidism, diabetes, arthritis?
LonePine, thanks for the reply, I don't have any conditions other than RLS and I didn't take any mediations except oxycodone and Belbuca and vanax and Lyrica to relieve my insomnia. Right now I don't know I should continue to take Belbuca or switch back to oxycodone because the Belbuca gives me more side effects than I can't tolerate. Thanks for the reply. Deeply appreciated.
Are you thinking about trying the iron? Might be a good idea to have Dr B test your iron levels.
yes, LonePine, I received two iron infusion two months ago when my ferritin level 59, my primary physician advised to take ferrous sulfate pill but I am taking Core Med Science liposomal iron instead because it is more gentle on the GI tract and no constipation. I will have blood test after 6 months to see if there is any improvement Thanks for your advice.
Well alright then! Just please for my sake take the iron on an empty stomach about an hour before bed away from all other meds.
Btw, if I had an iron infusion, or if I took the iron in the morning, or even afternoon, it would do NOTHING for my night time RLS. NOTHING! My RLS, like most people's, occurs at night, when serum iron levels (not ferritin) drop precipitously. I believe serum iron is at its lowest levels around midnight. This drop does not bother the non-RLS world, but it does us. We with RLS rely so heavily on that serum iron, probably because we have little to no brain iron reserves, and our d2 receptors that rely on that iron, are puny. For imagery purposes, imagine driving a car with a lousy engine, that has no gas tank, and you have to rely on a continuous supply from a gas pump at a gas station. What's gonna happen when your gas station closes for the night? During the day we can keep putting gasoline directly into the engine and creep along, with that crappy engine, but when those stations close...
Iron uptake by the brain is a minute by minute thing...for everyone...not just us with RLS. For most people that RLS moment never comes, not even at midnight. But we with RLS just can't handle that nightly drop in serum iron. By taking ferrous bisglycinate around 10pm I'm sneaking my brain some much needed iron. Only lasts one night so must be repeated. I can literally feel my RLS fizzle out and then I get extremely drowsy.
There are dozens of people on here for whom the night time iron works. It has been working for GillRLS for the past 6 years. healthunlocked.com/rlsuk/po...
And here's what another member has to say:
Marlayna•
3 months ago•40 Replies
Hi all. I thought I would pop in and share some good news. I have refused to take all the drugs that have been offered to me. But even experimentation with lower levels of hydrocodone and OxyContin have been uncomfortable enough that I refused to go in the opioid direction. What has worked for me and continues to work for me is taking chelated iron and not eating sugar. I have a very severe case of RLS and it’s in my arms and shoulders as well as my legs. Taking 18 mg iron around 7 PM at night has done about 95% of the trick for me. I hope this helps someone out there as I found this information on the site and it has helped me tremendously.
Chen, I noticed that with the type of iron you take it has only 28% of the RDA, per serving??? I take 100 up to 300% each night. I guess I got a "big brain." That's a line from the movie "Jimmy Neutron" which was on a continuous loop in my house when my kid was little.
I bet if Marlayna took a little more iron, and closer to her bedtime, rather than dinnertime, her RLS would be 100% better, rather than just 95%.
Hi halperichen, I am correct that you switched from oxycodon to Belbuca because of the oxy-induced insomnia? It is a bummer that the side effects of tue Belbuca do not settle. Joolsg has treated her (anxiety?)side effects with cannabis, but I don't know whether you can source that.
I also suffer from side effects of buprenorphine, but mine are mainly sedation, lethargy and cognitive problems. I very recently some sensible advice from our pharmacist. To treat side effects, it is possible to switch to a buprenorphine variant that combines with nalexon. Naloxon offsets some of the effects of opioids, and it may help to settle side effects. The recent updated management guidelines for RLS in the Mayo Clinic Proceedings of Sept 2021 mention Subuxone, the variant of buprenorphine that is combined with Nalexone. Shumbah mentioned earlier that Subuxone is not good for RLS, but the paper contradicts that. Also, one has to try. If you have a helpful doctor, you can also try changing to another opioid. Apart from Oxycodon/Oxycontin methadon is used a lot. You are in the US, right? And may be able to get methadone prescribed.
Additionally, you may want to explain your problems with the side effects to dr Buchfuhrer, and ask for his advice. His email is somno@verzon.net. He usually replies with a day.
I hope you get this sorted.
Ultimately, would you consider returning to the oxycodon and adding a sleep medicine (Z type I think are best, but ask your doctor).
Thanks for the thoughtful reply and I am deeply appreciated. If the subuxone has fewer side effects, especially insomnia I'd like to bring it up with Dr. Buchfuhrer who prescribed the Belbuca. Do you have the dosages for RLS and I am located in the US, and if subuxone is accessible to rls patients here. I am also thinking to returning to oxycodone I have fewer side effects than Belbuca but the insomnia is the reason I made the switch so you know I am very confused as what to do right now. Can I just stop taking Belbuca and take oxycodone on the same day? Thanks
If your doctor is dr Buchfuhrer, than please talk to him and tell him what you told us about the side effects. When medicines do mot work sufficiently or give difficult to tolerate side effects, one embarks on a difficult journey of finding a medicine with a better balance. Dr Buchfuhrer will know doses of Subuxone, but averages and maximum are mentioned in the recent updated guidelines in the Mayo Clinic Proceedings of which dr Buchfuhrer is a co-author.
I think many people on the forum envy you for being a patient of dr B, but that doesn't mean your personal journey in finding the medicines that suits YOU best is any easier. Please don't delay talking to him, tell him what you told us and ask for options and discuss which one you want to try next. Do consider and discuss with him the oxy option with an added sleeping pill. He has loads of experience and you know your body and reactions. You'll sort it out, I am hopeful.
Thanks LotteM, yes I am fortunate to have easy access to Dr. B and I have written an email inquiring how to switch from Belbuca buccal film to oxycodone or other opioids. When he responds I would like to ask him about Subuxone if it carries less side effects. He does ordered Xanax to relieve my insomnia, unfortunately the Xanax only gives me 3 hours sleep. He is reluctant to order klonopin because Klonopin has long lasting sedative effect. It is very unfortunate that I can't tolerate buprenorphine which is considered to be such a better option for a lot of our members. Every person responds differently. Thanks for your reply.
hI, LotteM, just want to update with what has been happening to me after visiting with Dr. B. He switched me back to oxycodone, 2- 3 tablets of 5 mg each as needed. I just stop taking Belbuca buccal film at 9 pm and started taking two doses of oxycodone 5 mg on the following day (at least 12 hours later), one at 1pm and the other 9 pm, but I still needed another 5 mg to calm my symptoms in the midnight. The following days, I resumed 5 mg of oxycodone at 10 pm at bedtime. I do still experience the symptoms during the day though. I wait to see if I need to add another 5 mg. I am trying to stick to the low dose because of the terrible insomnia it induced. Thanks for all you help.
Hi. Thanks. Re the daytime symptoms, I think I had and have the same. And I think it is withdrawal from the evening-before tablets. Not everybody gets that, but I think I do. Do you think that is what is happening to you too? If so, we need more continuous dosing, but that means higher overall doses and thus more side effects. A typical catch-22 situation.
I can only advise to observe closely on doses, symptoms and their timing. Sufficient night-time meds I think are important to ensure good sleep. If we sleep well enough, I think we can deal with some/mild daytime symptoms.
If the Oxycodone was giving complete relief from the RLS you could go back onto that. However, it seems you switched from that because of insomnia and you are also getting insomnia on Buprenorphine.Clearly it would be better to take the Oxycodone because it gave complete cover of RLS symptoms and didn't cause nausea and anxiety.
However, you will then need to address the insomnia and the best way to do that would be to add pregabalin or gabapentin.
Dr. Buchfuhrer advised me to add pregabalin when I suffered anxiety and panic attacks on Oxycontin and he also said it would act as a sedative, helping sleep. He was correct. It stopped the anxiety and did act as a sedative.
You could also take cannabis as that helps with sleep.
Thanks Jool, having you and other members on this forum gives us a direction and a sense of security. You are right the Buprenorphine buccal film gives me more side effects than oxycodone. But I don't know how to do the switch, do I have to do the tapering on Belbuca? I have been taking Belcuca 375 mcg for 20 days. Thanks for your reply. deeply appreciated.
No- when switching opioids you make a direct switch at equivalent dose. Otherwise you'd experience opioid withdrawal which includes really severe RLS.
Do you mind my asking what is the equivalent dosage between Belbuca and oxycodone. I am taking 375 mcg of Belbuca and took 5 mg of oxycodone before I started Belbuca. Can I just take the same dosage of oxycodone ( 5 mg ) to replace Belbuca. Thanks greatly for your help.
I think you should ask your doctor and pharmacist to ensure you're given the correct equivalent dose.5mg of oxycodone is equivalent to just under 10mg oral morphine and 10mg oral morphine is equivalent to 0.125mg of Buprenorphine. So your Buprenorphine dose is about 3 times the Oxycodone dose you were taking. You may have to take 15mg oxycodone when you swap and then slowly reduce to see if you can manage on a smaller dose.
Discuss with the doctor and pharmacist. Perhaps they should have started you on the absolute lowest dose of Buprenorphine. Here in the UK you can get 0.2mg subligual pills but not sure if they're available in the USA.
Thanks Joolsg, it is so complicated to do the swap. I am so regretful about switching to Belbuca from oxy. Now I just don't know how to do it. I have written an email to dr B about the switch and now am waiting for his reply. Do you think I might need more than 5 mg of oxycodone in the future because of the high dose of Buprenorphine in my system. Do you think the higher dose of opioid I have been taking in the past 20 days might worsen my RLS? Thanks,
I really can't answer that question. It might not - but until you swap you won't know. As you're under Dr. B, he will advise on how to switch and you can explain the side effects of the Buprenorphine are worse than Oxycodone.
Thanks Joolsg, I greatly appreciate your knowledgable information. I am waiting to have a zoom visit with Dr. B. He thinks that it is more complicated to switch, so that he will give me a different medication. I wait to see and keep you posted. Thanks,
I have definitely heard of people in US being prescribed subuxone for rls.
There is a good video on YouTube of Dr. Chris Earley (of Johns Hopkins University Hospital rls department) discussing opioid treatments for rls. He highly recommends trying lots of different opioids to get the best fit. It can be very individual.
As one who suffered profound alerting on oxycodone, I sympathise with your plight. I found it hard to get any sleep when taking it in the quantities I needed to cover my rls symptoms.
I presume you have tried Kratom. For me it is not nearly as alerting as oxycodone and has fewer side effects. Dr. Buchfuhrer is not a fan however. He cites the lack of supporting evidence.
Good luck. I hope you find an acceptable solution.
Thanks involuntarydancer, Can I go ahead to take kratom alone or stop other opioids? Please advise as how to take Kratom in relation with other opioids. Thanks for your response.
Lottem could probably give more informed advice on this than me. I am not medically trained or a scientist. Also, my rls is so unbearable (to me) that I am prepared to take risks to avoid experiencing it and have tried everything going including experimental drug treatments such as dipyridamole and naltrexone. When it comes to my own rls I am the opposite of risk averse and my comments should be viewed through that prism.
I believe Kratom and opioids operate in a similar but not identical pharmacological manner so it’s probably not a good idea to take a full dose of opioids and a lot of Kratom.
Considering how widespread the use of Kratom is in the US there is a surprisingly low incidence of death associated with it. The deaths that are recorded often have an associated opioid overdose element.
I take Kratom with a small dose of buprenorphine (0.2mg). Conversely, I used to take an occasional boost of Kratom when my main treatment was oxycodone.
I would hesitate to do more than add a small amount of Kratom if the main treatment is an opioid. If I were switching from an opioid to Kratom I would probably gradually reduce the opioid while adding in and gradually increasing the Kratom probably starting with a dose of maybe 2 grams of Kratom to see how I got along with it.
In your shoes however, given you have a very knowledgeable treatment physician, I would be inclined to revert to Dr. B first to see if he’ll try another opioid. The fact that Kratom is unregulated is anxious making. I would much prefer if there was a prescription drug that worked as well for me.
Thanks involuntarydancer, very knowledgeable advice about Kratom. I will be very careful and cautious since I am not very knowledgeable about the interaction between natural supplements and prescription medication. Certainly I will follow Dr B's advice. Thanks for your reply.
Think about cutting the Belbuca sheet in half. It's more sedating and more euphoria at lower doses. drugs.com/answers/buprenorp...
"Additional buprenorphine: Although there is limited published data, it is the experience among many experts, that generally, additional buprenorphine is more rapidly effective, and less sedating (and potentially obviates the need for an IV)."
Don't forget, take the iron last before bed. 
LonePine, please refer correctly. You write 'more' euphoria and sedation whereas your cited source says 'less'. That creates confusion.
Also, buprenorphine is usually used and researched for rehab of opioid addicts. And in far higher doses. Results of such research therefore do no always apply directly for people with RLS on very low doses of buprenorphine. What you write here is a very common experience: side effects are usually (but not always) less at lower doses. But side effects always have to be weighed against intended effects. It often is a delicate balancing game. Fortunately, most side effects settle after some time. But again, not always. 😒
"Additional buprenorphine" is "less sedating." That means less is more :).
I don't know where you quote from, but to my knowledge the "less" is used in comparison to other opioids used in similar situation. Again a warning, quotes taken out of context are open to very many, but unsubstantiated claims.
I would like to call for caution rather than to jumping to conclusions. If things were simple, we wouldn't suffer so much.
Do you know how to do searches on the internet? I would be glad to explain it to you. Then you can arm yourself with information, or misinformation, as the case may be and then confirm or negate my articles. Here's anothersamhsa.gov/medication-assis... Per the May 2021 article:
How Buprenorphine Works
Buprenorphine is an opioid partial agonist. It produces effects such as euphoria or respiratory depression at low to moderate doses.
The time you wasted "warning" me you could have spent "learning" something, anything, that may then be of help. Like this ncbi.nlm.nih.gov/pmc/articl....
I think and feel this is a very negative attitude towards me. I like to think we are here to help each other by sharing experiences and information.
You sternly "warned" and accused me twice about reckless posting. I don't get it Lotte. Why not research it for yourself. Do you prefer taking an authoritarian role here?
Again, stop warning and start researching. We have people on here with suicidal ideation. Do you want to help them or "warn" me? ajp.psychiatryonline.org/do...
I am also a patient of Dr. B. He has prescribed numerous opioids for me. I have trouble tolerating any of them. Oxycodone gave me insomnia as did Kratom. Belbuca made me sick and didn’t relieve my symptoms. Have you tried methadone? I have to take it sparingly because of the nausea but it doesn’t give insomnia.
Hi Halperinchen, I have taken endone or oxy for pain , whilst on Buprenorphine with no problem.
Also you can switch back it’s a very low dose.
You cannot take ANY opioids at all on Suboxone as Naloxone blocks all opioids and must be stopped 2 weeks prior to surgery so that you don’t feel the surgery.
Zofram stops Nausea
How long have you been on Buprenorphine,
Some people take longer to settle.
I don’t know why but I was forced to try Temgesic in Australia which is Mcg sublingual and I was nauseated.
However on Buprenorphine Mg high dose longer half life I had no nausea.
I had terrible leg pain prior to starting Buprenorphine and it took about 6 months to go.
Professor Winkelman says it can be worth changing time of day Buprenorphine for insomniacs and adding a sleeping pill.
MY dose is higher 2 mg 24 half life so I have 24 hour coverage .
Yours is Micro dose and short half life.
I know this may sound silly however high quality CBD
BRAND I USE
The Beauty Elixirs 2000mg CBD
a couple of swigs straight from the bottle aids depth of sleep,
For leg pain I used to creams from the beauty elixir the pain cream with CBD and on top of that I added the one she made especially for me and now sells it for RLS.
I found using both in that order really helped and
an electric blanket really helps the pain and relaxes the muscles.
I know a lot of people who use these range now and the pain creams are really good for all pain including sciatic,
Neck , shoulders, dermatitis, bursitis etc .
Did you have leg pain prior to Buprenorphine?
Is the Buprenorphine not stopping your legs ?
How long have you been on Buprenorphine ?
Hi, Schumbah, thanks for your help. I have read all your posts and admire and respect your courage and persistence to pursue what is right for you and also have the ability and financial resources to do so. My hat is off to you. I am presently taking 375 mcg Belbuca (Buprenorphine buccal film) 150 mcg at 1 pm, 150 mcg at 5 pm and 75 mcg at 9 pm. I am cutting the film as precisely as possible to fit the dosages. I have been taking it for 23 days. Before I switch to Belbuca, I had been on Oxycodone 5 mg for almost 4 years without any side effects, even no insomnia, but unfortunately, From the beginning of 2021 I started experiencing insomnia, to the point I can go all night without sleep. It is for this reason I asked Dr. B to switch me from oxycodone to Belbuca. Right now, Bulbuca makes my insomnia worse and on top of insomnia I have anxiety and nausea, thigh and calf muscles pain and weakness from taking it. I didn't have any muscle pain both in my calf and thigh before taking Belbucal.
I am taking THC with CBD Indica without too much effect for my insomnia. Right now, I am waiting to have a zoom visit with Dr. Bucchfurer for him to prescribe some other medication to replace Belbuca. I wait to see and will keep you posted. Again, with the intuitive sharing of knowledge, we the rls sufferers can find a glimpse of hope to live. Thanks again.
G’day from Oz,
Insomnia is tough, I have emailed your case to Dr Glen Brooks as there are a few that suffer , I am not sure there is a solution.
He is a practicing anesthetiser 2 days a week so he knows drugs.
I asked him if Ketamine helps.
With your THC that has CBD , I would add another bottle of CBD only and have a swig or 2 allowing time for the sublingual uptake between doses for max absorption.
I know a lot of people who do it that way and they have another swig if they wake.
I know it’s not a great answer but it may help.
We are all so different, I am lucky I can take melatonin without it effecting my legs, however I don’t use it regularly.When I do I use the brand I told you about as it has CBD , Melatonin and MTC. IT MAKES ME SLEEPY IN 15 minutes.
Not good for many people and certainly will not help RLS.
Luckily mine is fully under control.
Are you having your THC in edible form , John Hopkins doctor recommended it be edible for RLS it acts for longer .
Smoking it even spraying does not last as long.
I found with medical marijuana spray I would need about 12 to 16 sprays into my cheek during the evening for it to take effect , allowing time in between for proper absorption.
Recommend dose was 2 sprays.
So edible THC might help a bit.
What format is you indica in ?
I suffered that pain you are talking about for about 3 years when I was on the oxycodone. It was horrid the only thing that helped was really hot electric blanket and those to pain creams and high dose THC really helped on extreme nights,and maybe an Endone. ENDONE keeps me awake so if I’m tired and have to go to dinner Endone will wake me up and get me through.
We are all so very different.
Once I started the Buprenorphine and was sleeping the leg pain very very slowly went it took a very long time. I actually did not think it would leave but it did.
Very very occasionally if I have big day on my feet I will suffer and use the pain creams.
It’s been just over 2 years since that wonderful meeting with Dr Glen Brooks and I finally felt confident this week {re pain }to take my electric blanket off the bed
the bed . My husband will be shocked and thrilled when he gets home tomorrow.
Truly hope we can find the answer for the very few people that appear to suffer from opioids induced insomnia .
I will let you know if Dr Glen has anything insightful to add.
In my thoughts
Thanks Shumbh, your compassionate reply and help touches my heart deeply. With all of your reply, I feel comfort despite my hopelessness and depression from the lack of sleep night after night. I am presently taking Cannaabis-Infused Gummies with 2:1 THC:CBN. I take one gummy every other night for fear of tolerance. 1 gummy has 10 mg of THC and 5 mg of CBN and 2 mg of CBD. I guess my insomnia is too severe to respond to it effectively. Xanax 0.5 mg gave me about 3 hours sleep. I don't know what else I could do to manage my insomnia at this point. I am so happy for your success with Buprenorhine, every person responds to medication differently. You're the lucky one. I do thank for your effort to contact Dr.Glen on my behalf and am looking forward to what he has to suggest. Thanks, I will keep you posted after the zoom meeting with Dr B later.
Hi Schumbah, What I mean is the altruistic manner of all of you who has contributed to the wellbeing of those who is seeking comfort and help. Thanks
Did you try lowering the Belbuca dose? I found that I cannot tolerate any more than 150 mcg at a time, although if it's spaced out I can take 2 doses separated by a few hours, if it's a bad night.
HI, Rwall, thanks for your reply, I am presently taking 375 mcg, 150 mcg at 1 pm, 150 mcg at 5 pm and 75 mcg at 9 pm. I try to cut it as precisely as possible to fit the dosages. Even with 375 mcg Belbuca, I still experience occasional RLS symptoms during the daytime. Unfortunately any dosage above 375 mcg I can't tolerate for the serious side effects. I am still experience terrible insomnia every night, which can't be relieved by Cannabis Indica and Xanax only gives me 3 hours sleep. It is the insomnia side effect is very difficult to proceed with Belbuca. thanks,
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