My neurologist has been prescribing this since March and it has been helping my RLS. When I went to get my prescription filled a few days ago the pharmacist told me they are no longer carrying it because the way it needs to be prescribed has changed. I was able to find another pharmacy locally who has the medicine, but when my doctor sent them the prescription for them to fill they said they cannot fill it the way it is written, that he needs to write the prescription for pain, not for substance abuse. I am assuming he wrote it for RLS. I live in America. Has anyone else encountered this? I am at a loss as to what to do! I need this medicine.
Buprenorphine sublingual : My... - Restless Legs Syn...
Buprenorphine sublingual
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Lana, I can only reply to you by giving my view. I am in Europe.
Maybe your could contact your prescribing dr and let her/him get into contact with either of tue two pharmacies to learn what has changed and how tue prescription is to be written differently. It is a bit weird, though, that the rules for the pharmacies dictate how doctors can write their prescriptions. But that is a different, and not uncommon issue. I think we are overregulated in trying to reduce risks to almost nil. There is imho never a zero risk situation.
I hope you get this 'fixed' soon!
Incidentally, I have been compiling a list of HU-RLS members that take buprenorphine for their RLS. In whatever form and regardless whether it is effective.
Would you mind sharing your dose, timing of dose, and whether it is effective and any side effects? Of you don't want to do it publicly, consider sending me a pm.
Thank you for your input. I was taking buprenorphine sublingual 2 mg 3 times a day (noon, 5:00 pm, and 10:00 pm. No real side effects that I have noticed, and it works great for me! Hope this helps.
Thanks Lana. Good to hear.
Are you sure about the 2 mg? I take sublingual tablets (brand name Temgesic) which come in 0.2 mg (milligram) (=200mcg microgram). One in the evening, a half in the morning.
I know Shumbah takes 1 mg tablets, usually one daily, sometimes twice daily.
Yep. The sublingual form in US comes in 2 mg and 8 mg. Shumbah cuts her 2 mg in half to get 1 mg. Her RLS isn't as bad as mine.
Good gracious! So you take 20x my dose. I think that declassifies my RLS to very mild. Or my body to supersensitive 🧐? Anyway, as long as it works, you continue to receive your prescription and the side effects are minimal - who cares?!
I think it's a different form between countries. I have no idea. Because I know the same amount in the expensive film version comes in a much smaller amount, but I believe it's the equivalent to 2 mg sublingual tablet. Ask Shumbah. She may know more about this than I do.
Does your buprenorphine have a brand or type name? And is it described in drugs.com?
I think buprenorphine hcl or maybe Suboxone? I'm halfway guessing, though, because I never see the Rx my doctor calls in. I just know it says buprenorphine sublingual tablets 2 mg. The bottle says each tablet contains buprenorphine hydrochloride USP, equivalent to 2 mg of buprenorphine base.
Thanks. I'll see if I can hunt down descriptives of the different forms and see how they compare. But as I said may be a classic example of waad (we are all different).
Suboxone is BAD for restless legs
SUBUTEX is the other name for buprenorphine in Australia
Only certain pharmacies are allowed to prescribe in Australia also.
There will be a special regulation or course they have to do.
The other thing that may side step is a thing called a private script.
I would contact pain clinics in your area and ask them what pharmacist there patients pic up there prescription. I can’t believe I am the only person on actual sublingual in Subutex in the format I am on in Australia. I am
Working very hard with a doctor who is opening a retreat and pharmacy where he will make the Subutex wafers and will be able to prescribe on a private script to Australian patients. It will not be allowed to be first line treatment but most of us meet that requirement.
Hopefully will be up and running in the next 3 /4 months.
That is why I am off the radar do to speak. Trying so hard to make a difference.
Are you still weaning off any other meds and do you still have pain also am also working in a natural pain relief muscle smoothing product with a second generation natural healer I am trialing with it at the moment. It will be available during the first half of this year. She is also working on something to help change the sensation for RLS suffers who are not severe.
If you need me Lana you know how to get hold of me 😊
Hi Lottie yes I take 2 or under
Still works a treat,
Lana case is very different and was very hard to get her to this point and I am not sure If she is still weaning off other medications as that definitely makes a difference.
Hello Lotte, Thank you for the information regarding Temgesic. I've had 12 spinal surgeries, and Temgesic was VERY helpful in getting me through the side effects of opiates like Vicodin and Norco.
However, it would be helpful to have more Temgesic, but it has become difficult to obtain. I have a prescription from my doctor last week for the 0.2 mg sublingual version of this medication, but nevertheless have not been able to find a source.
Can you provide some information that would help me to fill my prescription for Temgesic?
It would be best to e-mail me (ericlietz@yahoo.com, or ejlietz@got.net).
Sincere thanks for any help that you could provide.
Eric
Hi Eric, I read several other stories here on HU that the Temgesic script is hard to fill. No good news. I don't know where you are based, but I am in The Netherlands. Maybe others in your country can help you. If necessary, start a new post with that specific question, as that most likely will generate more replies.
Hi Lotte, not sure if you have me on the list but 100mcg Temgesic causes terrible nausea for me. Not sure if it helped the PLMD, was too nauseous to tell!
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I have! There is also another person who had severe nausea on the 0.2mg dose. I am very sorry it didn't work out for you. Especially given that Lana can stand such high doses. Life isn't fair, we already knew that.
I am feeling nauseous as well on the Temgesic and the Norspan Patch.I wasn’t sure if the Buprenorphine was the problem. My doctor has referred me to a gastroenterologist. Maybe that is a mistake.
To be honest, it does upset my stomach a little, but the benefits definitely outweigh that side effect. My doctor prescribes me Zofran to help with the nausea when I get it. Thankfully, I don't get it every time. I wonder if it would help others to try Zofran. Pepto Bismol works well for the nausea, too! I don't know if any of those options would help those who suffer with nausea when they take the buprenorphine?
Lotte - Thank you for doing this! It will be very helpful to those of us who are considering this treatment at some point. It may not be technically a scientific study, but in many ways just as important if not more so. I am in the US study on long term use of opioids and they do have some info, but not this specific.
I live in the U.S. I have been prescribed Belbuca 150mcg twice a day by Dr. Buchfuhrer. He initially prescribed it and now my PCP orders it. It is the buccal film buprenorphine. It is very expensive. It helps with my RLS but leaves me with very little energy. I have to literally make myself get up and do things. However, my RLS was so debilitating, that I consider this a blessing. I am sleeping 6 to 7 1/2 hours per night. I do have some breakthrough RLS during the day, but not at all like it was.
I have been taking suboxone cut up pieces into 1mg/.25 doses. Morning and night. Can’t get it prescribed but can get on black market funny enough. I had to say fuck the doctors since nothing they gave me helped. My neurologist finally prescribed it to me, but turns out he can’t!!!! I said fuck this medical system and became my own doctor. 2-3 years at same dose and same great effects. I know it may not work for everyone. But only thing that works for me. So much so I get it illegally, cause I just want relief that bad. USA medical system is a joke. Most doctors call me an addict, and only reason I ever did an opiate was to sooth my legs. So I don’t know how I am an addict that only started opiates cause I thought I had Parkinson’s I was shaking so much uncontrollably on the floor.
Lana have you contacted lovely Dr Glen Brooks
I spoke to him a couple of days ago via email
Hi I am on Buprenorphine 400mcg twice a day morning and evening theyvare working great intact I'm sleepin too much if that's possible. No sickness . The box has Tephine written on it is that the make ?
Hi Paliminojust thought i would explain so others understand the difference.
Your dose will not be high enough Lana is dose is mg yours isTemgesic in micr-dose mcg also has a 5 hour half life
Buprenorphine has 24 to 35 which in Lana case she needs.
My heart sings that you are doing well:}
24 to 35?? 🤔
Sorry was meant to say half life 24 / 35 hour half life
Temgesic is 5 hour half life
Apologies for confusion
So glad you got sorted I went through a lot of issues my pharmacy now gives 6month supply at a time
I still find that my dose is stable between 1 and 2 mg at night
Always in my thoughts
Sorry to correct you, Shumbah. But there is no essential difference between Belbuca, Temgesic or Subutex, all oromucosal absorption ways of the substance buprenorphine. The pharmacokinetic information, about how and how fast the buprenorphine gets absorbed and distributed in the body, and excreted again, gives widely varied values. Indeed, the assessed elimination half-life, the time it takes to eliminate half of the amount of buprenorphine originally absorbed, varies from 3-44 hrs. See this paper (summary only): link.springer.com/article/1... . From what I understand this is due to various routes/ways of elimination, something like a fast and a very slow lane. But it is difficult stuff, these pharmacokinetics, and not much specific knowledge available on buprenorphine.
Personally, I can completely control my RLS with only 0.2mg of buprenorphine in the evening and add only 0.1mg in the morning to avoid daytime restlessness and afternoon mild RLS. It is far more likely that the different individual needs for the amount of buprenorphine depends on the differences in how our bodies deal with the substance. WAAD - we are all different, as we so often say. Furthermore, I would like to stress that in my opinion it is always wise to start low and try to find the lowest effective dose of any medicine. I'd rather do without....
Thanks Lotte
It is different to other info I’ve read , and when I started it near impossible to find anything on buprenorphine . In Australia I still cannot find a doctor or pharmacist who can convert the dosage from Temgesic to Burprenorphine .
When I came back from the US I asked how many Temgesic doI take to make the equivalent of 2mg Buprenorphine.
I asked 6 NO ONE could answer that and they are the professionals all I got was
Shoulder shrugs.
I don’t know
Or
You will have to work it out yourself.
I shall print your info.
I’m so glad there are so many of us to keep researching.
I refer a lot of people to HealthUnlocked and I tell them you will get the best information on the planet it is the only place you will get support It is a team of life savers and sanity helpers-
I for one am so very very grateful for everyone’s contributions that are usually done with one eye open and standing due to this horrid condition.
Thanks Lotte
Hi LotteM, please add me to the RLS (severe). I use Belbuca 75mcg in morning and 300mcg in evening. Works very well.I see Dr. Paceta at Scripps in S.D. California. Great doctor but they are not very knowlegable about Belbuca yet.
Are there alternatives that are less expensive but has the same Morphine equivalent (MME)?
Thank you.
Lana, did you get any further yet to obtain the meds on your new prescription?
Have you maybe contacted rls.org for advice and help?
No response yet on rls.org. I am waiting for dr's office to open in a few minutes. Praying he will be able to get my medicine for me. This is crazy!! I am completely out now. My RLS has already been acting up. Thank you for your concern!
🤞🏼
No leftover other meds to see you through? I still hold on to some oxycontin and even ropinirole. One never knows.
I use the entire prescription each time. The pharmacy won't let me refill the prescription until the last day each month. So I never have any left over.
Lana there will be pain management drug clinics what ever you call them in the USA ring around and ask where to prescriptions filled we have the same issue in Australia.
Also get a letter from your prescibing doctor to Pharamists saying why you take this medication and that you do not have a dependance problem.
I showed that to a apharamisist and he then told me which pharmacy were able to fill scripts for me.
Ps what Palimino is on will not work for you its in micro dose and only 5 hour half life
All the best Lana
Hey, Lotte! I actually do have kratom and it is legal in my state. So thankfully I had that to fall back on. But the other good news is that my neurologist was able to call in the prescription this morning and add the wording the pharmacy required and my sweet husband just picked it up for me!! Whew, I am so relieved. And I want to thank you for being so concerned for me and caring about me and giving me all the suggestions to help me get through this. You are too sweet!!
Good news Lana! Also about the kratom. It is indeed a safe feeling to have something to fall back on - if needed. Sleep well tonight.
Would you mind to share what and how your neurologist changed in your prescription? That may be helpful to others that encounter the same problem.
I am living in uk I got neurologist appointment in feb I will ask this if he can prescribe me
Hi LanaCSR. I’m afraid I don’t know a lot about this myself but others on this forum will I am sure. I saw it in one of the posts and so I assumed if I kept my eyes open I would see one of the posts mentioning it. I have been waiting to access it myself in the hope that it would influence my GP to prescribe Temgesic. Good luck with you search