Buprenophine success!

[erika13]

I am so grateful to Shumbah for posting and sharing her experience and success with Buprenorphine.

I was able to get it prescribed from a neurologist here in Japan yesterday (0.2 grams as a suppository) and I tried it for the first time ( 1 x 0.2 mg suppository) last night. I slept for almost 10 hours with two short wakings but no restless leg symptoms at all .. only very relaxed legs! I dreamt for the first time in many, many years and it honestly felt amazing to sleep. I didn’t feel groggy or tired at all on waking.

I did see on the “Webinar 2016: What is the Role of Opioids in RLS?” that buprenorphine was one was of the safest opioids .. with much less respiratory distress and central nervous system sedation than many of the others. It appears to have a lot less addiction and tolerance issues compared to oxycondon and morphine.

Here is a link to that webinar:

youtube.com/watch?v=iCNI_UC...(Not working as expected?)

To give you a bit of a background, I was taking Kratom for many years, which worked fantastically at first. I built up a tolerance and had symptoms augmentation (earlier in the day, the symptoms moved to other parts of my body etc etc).

I’ve been searching for natural solutions and explored many complementary or natural modalities includes trans-cranial magnetic stimulation, diet (I’m gluten–free for many years), herbs, supplements, an iron infusion (Ferrinject) etc etc. I’ve been surviving somehow on only several very fractured hours sleep a night with a constant feeling of restlessness and electricity running through my legs over the past few months. It’s been really unbearable.

Here in Japan many opioids like codeine and oxycontin are banned, except for several synthetic or semi-synthetic ones. My neurologist prescribed Tramadol extended release about a month ago,, but I felt so groggy the next day and didn't continue.

I know everyone is biochemically very different and respond to meds differently too.

I will keep updating and reporting back on the Buprenorphine.

But a huge thank you again to Shumbah for posting and sharing her story and for all her research!

[erika13]

Here is a link again to that Webinar:

m.youtube.com/watch?v=iCNI_...(Not working as expected?)

[rkatt]

Very exciting. Thanks for posting. I was wondering if there’d be follow up to Shumbah’s earlier post. I take 20mg Oxycodone which helps a bit but makes me sleepy and downgrades my mood so I feel cut off from myself. Do you have any such side effects from Buohrenorphene?

[erika13 in reply to rkatt]

Hi rkatt,

I’ve only been on it for a day. I’m sure Shumbah can shed more light on this. I have read that Buprenophine has a mood lifting effect (Via the effect on different opioid receptors) and has a slightly different mechanism of action to oxycondone. I’ll certainly report back!

[rkatt in reply to erika13]

Thanks! Good news at last.

[LotteM in reply to rkatt]

Hi rkatt, I take a little less oxy (10mg in the evening), but have the same side effects. The problem will be to get your gp or neurologist to try an unknown opioid such as buprenorphine. Time will tell.

[rkatt in reply to LotteM]

True Lotte.

I have asthma which might swing things my way - Oxy squeezes my lungs badly. Some of the younger (female) docs at my practice are very helpful, and willing to be informed.

But my hopes are low.

[LotteM in reply to rkatt]

Oxy most probably gives me apnea 😒. I will get the results of my recent (3rd) sleep study in two weeks. And then we'll have decide what next.

[rkatt in reply to LotteM]

Good luck.

[erika13 in reply to rkatt]

A second night of fantastic sleep and I woke up feeling positive for the first time in years and years!!

From the webinar, please see the page “Comparison of safety profile of buprenorhine with other opioids” at about 21 minutes into the webinar. The buprenorphine explanation starts at about 17.33 min into the webinar.

I printed this all out as well as the study below and gave it to the neurologist here, and I also mentioned Shumbah’s success.

Here is a link to one study:

academic.oup.com/sleep/arti...

Another study was withdrawn due to a lack of funding. Here are the details for that:

clinicaltrials.gov/ct2/show...

As I mentioned, most opioids like vicodin and oxycontin are banned in Japan and they have a different view on the semi-synthetic ones and there isn’t a bias about prescribing them.

I really hope it leads to further research!

[Shumbah in reply to erika13]

That is thrilling 🥳

It would be wonderful if we could really make a difference and path the way for a new option for people to try .

I am working really hard emailing Professors and specialist trying to make a change .

At least with this dam virus 🦠 keeping us at home I will have more time to dedicate to it .

🙂

[Shumbah in reply to erika13]

Ps thanks for all that info .

I used it today in a meeting with a Gp

I think I’ve had a win but not certain

He wrote the script after making several calls and the pharmacist said we are not allowed to fill it 😡

The Doctor wants me

To have it it’s the Queensland health that is hard work .

God bless them uneducated people talking about something they know Zero about .

Let’s see if I have a win tomorrow

🙂

[LotteM in reply to erika13]

Thanks Erika!

[Parminter in reply to LotteM]

Lotte, it really should not be unknown. There has been quite a lot of news about it, not only in journals.

Coach your medics to get up to date!

There has certainly been quite a flutter about help for treatment resistant depression.

[erika13 in reply to rkatt]

Just a quick update.... I've almost been on buprenorphine for a almost a month.. averaging 8 to 9 hours of sleep with zero breakthrough during the day or evening and no side effects at all for me as yet. I feel "normal" with no fogginess or fatigue the next day at all! It's an amazing feeling! I hope it continues.....

A huge thank you again to Shumbah .. I wouldn't have known about it if it hadn't been for her posts!

[Heatherlss in reply to erika13]

Wonderful Wonderful Wonderful Wonderful!!!!

You give me and all of us hope.

May your relief last forever. What did you show to your doctor to get Buprenorphine prescribed ? I mean any data from the internet that I should know about. ?

[erika13 in reply to Heatherlss]

Hi Heatherlss,

I took along the relevant pages on the safety of buprenorphine from the John Hopkins / RLS webinar. “Webinar 2016: What is the Role of Opioids in RLS?”

It compares all the different opioids amd clearly shows that buprenorphine was one was of the safest opioids .. with much less respiratory distress and central nervous system sedation than many of the others. It appears to have a lot less addiction and tolerance issues compared to oxycondon and morphine.

I also printed out Shumah's post ..

I'm based here in Japan though .. and many other opioids including oxycodone Are banned here.. so we didn't have an opioid crisis here and I'm sure that perhaps allows more freedom in prescribing.

I just went to my neurologist again today and reported my success and story ... He's going to spread it as a possible treatment for refractory RLS here! He was so pleased to hear it! I'm only on 3/4 a night of a 0.2 mg suppository .. so it's a very small dose!

As I mentioned, I've had no side effects at all and no breakthrough ... Like Shumbah.

There was a study but they had to Withdraw it Midway due to a lack of funding. There was one other small study. I'll try to find it!

[erika13 in reply to erika13]

This was the study that was withdrawn due to a lack of funding

clinicaltrials.gov/ct2/show...

[erika13 in reply to erika13]

This small study was published last year on buprenorphine plus Naloxone:

academic.oup.com/sleep/arti...

[LotteM in reply to erika13]

Thanks Erika. For posting your success story and for the info. I also looked into buprenorphine and indeed, didn't find any other study related to its use for RLS than the one you posted. I did find this very helpful review, maybe that is where Prof Early of Johns Hopkins got his information for his webinar: dovepress.com/buprenorphine...

[erika13 in reply to LotteM]

Hi LotteM,

Thank you so much for forwarding on this review of Buprenophine! It’s an excellent and very thorough review and comparison to all the other opioids.

Buprenophine is prescribed here In japan for cancer pain and chronic pain. However it’s only available as a patch or a suppository.

Shumbah is taking it sublingually.