Buprenorphine Subutex and Temgesic

[Shumbah]

I thought a visual might help some of you

This is made in the UK

[Shir_11]

I have been taking the Temgesic now for 12 months. No problem getting prescription from my doctor in Australia. Chemist warehouse price with prescription is $36 for 50. No concessions. I take 1 a day cut in half and taken around 3pm and 9pm. It has saved my life. Thank you Shumbah for introducing me it.

[Shumbah in reply to Shir_11]

You are so welcome Shir

Isn’t that absolutely thrilling , life without RLS Hooray.

Only if you feel like it .

I am wondering would it be possible if you can help the Australia/New Zealand Facebook group that I was band (totally blocked ) because I was. talking about Buprenorphine , they said my letters and information were not relevant because it came from the USA . Even though I had to leave my Brisbane hospital room and fly to America and meet with some of the leading Professors and doctors and institute ( John Hopkins ) to find this life saving treatment.

Although blocked from this group I know there so many people in that community needing this information and that GPS can prescribe it with ease in Australia.

I have known couple of GP friends prescribe with no issue as at all.

Subutex is a different route.

I wish other doctors in Australia would allow them to access more easily.

It would be lovely If you could ask your doctor to do a letter up for you for when you travel again outlining what it is used for and photocopy it then black out your personal details and pop it on that group for others to show there GPS .

My Doctor wrote that is severe Restless legs Syndrome and that I was a non smoker and used no other substances he also wrote a summary of other meds I had tried unsatisfactorily .

I am really happy for you 🌷

[Shir_11 in reply to Shumbah]

Unfortunately my doctor is useless and doesn’t want to know about my RLS. I want to see another doctor but not sure how they will react to the Temgesic and Norspan patches.

[anuke in reply to Shumbah]

Hi, Is it really works. I have gone through all available medication without any effect. Finally, I started to take ropinirole 4mg 3 times a day. Some days I am absolutely fine, but I am experiencing severe RSL episodes about 3 times a week were ropinirole isn't helping at all, then I take more and more every 30 min until restlessness stops. Even 30mg a day. I don't know, maybe you can send me this letter and I can discuss it with my neurologist. Thanks for your help, anu

[Shumbah in reply to anuke]

Anuke , do a history letter up .

you can check my bio for idea

ready for your doctor.

I have sent you me email via private message

What country do you live in ?

[anuke in reply to Shumbah]

Sent email. I am from UK

[Shumbah in reply to anuke]

I have replied ;}

[anukes in reply to Shumbah]

Thanks, I have look now. and will be on Fb shortly 😊

[Jumpey in reply to anuke]

Hi that is a lot of Ropinerole to be taking.I'm wondering if you are suffering augmentation from the Ropinerole and that is why you are experiencing the severe episodes.

[anuke in reply to Jumpey]

Augmentation?

[Jumpey in reply to anuke]

It is well known that dopamine agonists like Ropinerole make RLS worse after a period of time. Please search for posts that mention it on here and get some advice from those who have suffered this.Good luck.x

[LotteM in reply to anuke]

Anu, do as Shumbah advises. In the meantime and with priority, do read about "augmentation". There is a pinned post, there is i fo on rls-uk.org and look at the most recent international guidelines for the treatment of RLS: mayoclinicproceedings.org/a...

Your 'standard' dose of 4mg 3 times a day is 3 times the maximum recommended dose for RLS! See the info leaflet that comes with the ropinirole. As you say that frequently even that is not enough, this is one of the signs of augmentation. Also, your account that you take the ropinirole 3 times a day indicates that you have severe daytime symptoms, whereas RLS symptoms usually occur mainly in the evening/nighttime. This is one of the other indicators of augmentation. A telling other aspect is when symptoms occur in body parts other than the legs. I suspect you have (early) augmentation. Do check with the references given and discuss with your doctor.

The best way forward in the case of augmentation is SLOWLY reducing and most often eventually weaning off the ropinirole. Each reduction will temporarily increase symptoms, which should settle after a few day to two weeks. The last bits are the hardest. If you start reducing, you may want a strong painkiller like tramadol to help with the increased symptoms. And you should have a plan ready for how to cover tour remaining symptoms after weaning off the ropinirole. Gabapentin or pregabalin are now first line medicines for RLS. But note, they take some 3-4 weeks to work, adjust to side effects (if they occur with you) and find the lowest effective dose.

I am afraid you will have some road ahead. If you read around on this forum you will find countless stories of other people who have experienced and done the same. That may give you strength and persuasion.

Finally, never hesitate to post with a question, to ask for info and experiences or just to moan and rant about how hard life with RLS is. There is almost always someone 'here'.

Edit:

I see Jumpey also noticed potential augmentation. S/he is right I am afraid.

[Shumbah in reply to LotteM]

Augmentation is not my subjuct so very grateful for your help:}

[Shumbah]

What a shame stay put then Don’t take the risk 🌸

[Jumpey]

Hi does tolerance build up to the Temgesic?

[LotteM in reply to Jumpey]

I haven't yet noticed any. After almost a year. And I built tolerance quickly on ropinirole and tramadol.

[Jumpey in reply to LotteM]

That's great.Are you in the UK?

[Shumbah in reply to Jumpey]

Brisbane City AustraliaI loved and nursed in the West Midlands for nearly 13 years , I absolutely loved it married had children some of which are still in that area.

All my very close friends are in the UK

it my second home

[Jumpey in reply to Shumbah]

Ah how lovely.And thank you for nursing our Brummies.I just wondered if you had had the meds on the NHS

X

[Shumbah in reply to Jumpey]

Lotte or Joolsg might know 😊

[LotteM in reply to Shumbah]

Joolsg is from the UK, I am from The Netherlands. But I know from post on this forum that several people in the UK managed to get buprenorphine (Temgesic variant) on the NHS. Mostly gps prescribed.

[Jumpey in reply to LotteM]

Thank you. X

[Shumbah]

Straight from Professor John Winklemans , Dr glen Brooks and the late professor Richard AllenThe evidence shows once you get the dose right it will not require increasing, only caveat maybe if you started strenuously exercising your legs and this is one of your triggers you may need a very slight increase.

Higher doses can be required to get through Augmentation then decreased once ceased.

No Tolerance : }

[Jumpey in reply to Shumbah]

Brilliant.

[Rwall]

I am only taking 150 mcg of the Buprenorphine and it seems to do the trick, along with 900 mg of Neurontin and a strict diet, less all of my triggers. When I went up to the 300 mcg it made me itch all over. I noticed the picture of the U.K. version is 2 mg., which is a lot more than my RLS specialist prescribes for me.