Please is there anyone out there who is taking 2mg Buprenorphine NOT temgesic.
I am trying to help the refractory cases in the UK that need the higher mg dose and 24 hour coverage.
If yes reach out and I will tell you what I need please.
I hope all my RLS family are doing well. Always in the thoughts and still always working in the back round.
Hi ShumbahI have RLS that needs 24 hour coverage.
I had a consultation with a nurologist last week. He sent a letter to my GP advising that I tri Neuro patch, (the only non opiod rsl drug I havent tried), alongside my Oxycodone, if that dosnt work he suggests I try, Perampanel with the Oxy, He suggests tapering Oxy down to 20mls daily and if the Rig and Perampanel dont work that I can try Buprenorphine.
I know this is a little off your post but still I think relevent because. in a few months I see myself on Bubrenirphine. Oxy stops me sleeping.
Best wishes
Jane
I looked up Perampanel and it looks very promising in helping RLS symptoms. My kudos to your doctor for knowing this. My suggestion would be to try that before the Neupro patch since that is a dopamine agonist like ropinirole and pramipexole which might eventually lead to augmentation.
Thanks SueThats interesting.
Day 3 of Nuepro and slight nausea, cannot relax/sleep and just started wierd flashing lights whilst lying in darkened room, everytime I blink!
And its not migraine. Day 2 if patch it was like sparklers connecting the nurons in my brain and almost at the same time I could feel my RLS reducing. Not stopping though completely.
I will get my Oxy back on Tuesday then the RLS will be okay.
Will give the patch a few more days.
😉
Hi Shumbah, I am taking 2mg buprenorphine currently and yes I need 24 hour coverage. I’m actually working on a potential increase to 2.5 mg due to the 24 hour issues. How can I help?
Are you in UK too erinjee?
I’m in the U.S. sorry, I missed that part of Shumbah’s question.
Hi Shumbah, I am not on Bup but I live in the UK & desperate to come off the Morphine I'm on for RLS & change to Bup patches. If there's ANY advice you could give me on how I could go about it I'd be v grateful. I have refractory RLS, I get it 21 hrs out of 24. My GP wants me to send him research from world experts on RLS who advocate use of Methadone & Bup to back up my request but I don't know where to start.I have a lot of other health problems dragging me down, lost my partner to Covid & have PTSD from that whole experience & am currently undergoing scans etc for suspected Cancer. I'm just not on form to pull it all together.
I think my GP will do it but needs evidence. I would need stronger than 2/2.5mg over 24 hrs too.
Thank you for all your help to us, I really appreciate your posts & expertise.
Kind regards
Helen
Hey Helen, I’m just sending hugs. I’m so sorry for your loss and the on-going stressors. Sending good healthy vibes your way!
Very kind, thank you..it's been 14 months of hell but as long as the scan just shows pneumonia & nothing more sinister, I hope my health can improve. 🤞🤗
My heart breaks for you please send me a messsage with your email address and I will send you my medical letters
Helen/ searcher55, there is one main paper about the use of opioids for RLS: mayoclinicproceedings.org/a...
And there is the quite recent updated guidelines for the treatment of RLS that also discusses opioids: mayoclinicproceedings.org/a...
The first doesn't (yet) mention buprenorphine, I seem te recall, but the second does.
Also, there is the opioid registry research by John Winkelmann, Mass General US: massgeneral.org/rls-registry/. On the latter page l, there are also several powerpoints with findings. Ao far, One paper has been published in a peer-reviewed journal, but only the abstract is available without a prescription. Nut maybe your doctor can access the full text: academic.oup.com/sleep/arti...
I hope this helps.
One final thing. What is your current morphine dose? Is it effective? And do you take it for RLS only, or do you have other (pain) issues as well? For RLS generally lower doses suffice (but not always). Buprenorphine is about 30-60x stronger than morphine. Relative strengths are given in MMEs, Morphine Milligrams Equivalents, but only few conversion tables list buprenorphine, as its equivalent is difficult to assess (don't know why).
So if 10mg morphine suffices, you will only need less than 0.2mg buprenorphine (available as Temgesic) to get similar coverage.
Hi sorry to hear of all your troubles the stress certainly does not help im just thinking about you changing from morphine to methadone I thought they are very similar nd I don't understand what would be different also why did the GP prescribe morphine in the first place was this this the first thing you tried.
Hey Shumbah, my friend! As you know, my neurologist prescribes me buprenorphine sublingual 2 mg. Even though I have told him several times that I need 24-hour coverage, he only prescribes me three doses at lunchtime, dinnertime, and bedtime. But I don't get any coverage, I feel, in the morningtime until I take that first dose of the day with lunch. He tells me that if I am experiencing RLS during the daytime, that it is not RLS. He says it must be something else that is causing me to suffer during the daytime. Now, I have to say my daytime symptoms aren't near as bad as the evening RLS symptoms are. So I just put up with it. But it really would be nice to find a way to get coverage 24 hours a day. I also feel like the buprenorphine isn't working as well as it used to. I feel it has lost some of its effectiveness and I don't know what to do about that. From everything I have read on this forum, it sounds like this is the best thing out there right now for RLS. So I don't want to stop taking it if there's nothing better that I can take. I have attached a picture of the bottle because you mention a specific name "temgesic", and I want to make sure I am not taking that kind. So here you go! I welcome hearing back from you about what you think. Thank you for doing this, Shumbah! I hope all is well with you.
Hi, I was on 200ugm Temgesic for about 9 months and slept through every night. However it started to wear off and I needed to increase the dose. This is because our body becomes more tolerant of the opioids and so we need more. So this lack of effectiveness is what we will all experience with opioids. It's a pity! I'm seeing a neurologist this Tuesday and will post the results.😎
Have a look at the results from the opioid registry by John Winkelman. They found that dose adjustments/increase mainly take place in the first year of use and far less so in later years.
hello lovely ,
Temgesic no good for you it is micro Mcg dose 4 hr half life and very mild.
Buprenorphine is mg milligrams .
I know we have spoken about , vitamins and meds that can over ride Buprenorphine.
I can’t take metformin, fake sugar and some vitamins
My good addictions are
For maybe a quality iron ( not around calcium foods ) I do a course once a year.
Magnesium forte
Potassium is a must
Folate
Sublingual B Complex
Lovely to hear from you
I’m sorry you are not getting the relief you deserve
Xx
We are the victims of the opioid war.Opioids have there place they are all different and Buprenorphine is entirely different than any other due to its ceiling effect making it safe.
It cuts out at a certain level hence its use in drug abuse clinics.
MIND BLOWING
Dopemine agonists they are happy to increase dosage to 3/4 times the recommended dose.
200 mcg is micro dose buprenorphine
2 mg my dose is way higher times about 20 and yet still tiny.
Dr Brooks said they start pain dose at 37mg .
Buprenorphine dose not have the creepage of some opioids
I was prescibed 2 mg however took Img for a year.
Then I started exercising a big trigger for I started taking 2mg which was my prescibed dose. sometimes I take a little less but never have Ineeded more.
Dr Brooks an proffessor J winkleman have both told me the evdince shows it will not require inceasing again.
I wish doctors would educate themselves about Buprenophine and aenethastics in Australia also have no clue they get very confused . The amount of times I have had to educate one is scary.
I asked my doctor if for some reason I could not get my buprenorphine how long would you feel any kind of withdawl effect.
2mg the dose I am on he said 2 to 3 days tops.
Dopamine agonists take years to wean off and some can never drop that last bit.
Doctors need reminding of this when talking Buprenorphine
Wishing you all the best
Yep I am a victim of the opioid war !!!
Yesterday my pharmist rang me to say he has informed my doctor that
they are no longer doing what they call the subutex program which means they will not be stocking or supplying buprenophine.
Always something to contend with.
All the best please dont let them scare you, research as much as you can about temgesic it is very safe, high success rate.
I’m only now reading your post. I’ve been on Buprenorphine approximately 2 years now starting on Tamgesic dosage 200 mcg. Immediately it worked for me. After a short period of time I received Tephine same dosage. Don’t know why but I can’t get Tamgesic again. I’ve been prescribed in the last year with Sertraline and the pain was so bad again I have had my dosage increased to 400 mcg. I am hoping that when I come off Sertraline I can reduce to 200 mcg again. I’ve always wondered whether it makes any difference using Tamgesic or Tephine.
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