UK RLS sufferers this is for you.

[Shumbah]

This week I received an Email from Professor David Nutt also from our Manerva ;]

Buprenorphine in the form of TEMGESIC 200mcg is available from your GP also I suspect Norspan patches which is buprenorphine dosing starting at 5mg.

Buprenorphine is a very superior drug it hangs onto very few receptors in the brain which is very helpful when it comes to addiction. It is in the same category as Methadone however a lot more friendly.

Half-life is 24 hours which is great for the all day suffers like myself.

The form I am on[subutex] is not available in the UK.

Buprenorphine has saved my life and others I have introduced to it.

For most people I know who have buprenorphine it it has worked perfectly .

One lady said to me tonight 10 hours sleep not even a bathroom break.

No daytime sleepiness, only side effect has been constipation an easy fix .

There have been a couple of people it has not agreed with but that could also perhaps been from coming off there old meds to quick.

I was on

20 mg OXYCODONE nightly

2 x 5 mg endone during the day

Stillnox nightly.

I did a straight switch in one night , it worked immediately.

Some of you will need to wean off other medications whist adding buprenorphine.

All this gave me was 4 hours sleep and alzheimers type symptoms I had NO memory at all, I could not even hold a conversation with my family as i could not remember what was said. I was in a very bad way my family were terrified and looking at care homes for meIwas only 57.

If you look at my profile you will see some of my horror story.

My condition lead me from a hospital bed in Australia straight to the USA for help I spent 5 days in the John Hopkins, Proffesor John Winkelman Boston and Dr Glen Brooks in NYC all are in agreeance that buprenorphine is gold and should be first line treatment not last.

When I asked Professor Winkelman why it was not offered first he said they use Methadone becuase it is a lot cheaper for Americains, Australian Doctors have zero clue about RLS and treatment they are still stuck on Sifrol .

I recomend that you write a letter of your medication failures and all the horrific side effects especially the suicidal thoughts. I wrote them all down as they dont ask your doctors history.

You have to say you have been on nearly everything old and new drugs to get to this kind of medication [buprenorphine ]which puts you in the Refractory category.

SO ENSURE YOU SAY THAT YOU HAVE REFRACTORY RLS which simply means that you have tried everything unsatisfactorly.

Professor Nutt from the UK says no specialist appointment required just ask your GP

Temgesic 200 mcg

OR

Norspan patches starting at 5mg

2 mg suppository form I am not sure if this available in UK It is in Japan.

If you live in the UK and are suffering from augmentation or your meds dont work this might be a good option for you .

I hope this helps some of you good people of the UK

[Hidden]

Thanks for sharing. Prof Nutt is a very knowledgeable man and I am moving through his Project Twenty21 - ensuring medical cannabis to people with pain, anxiety, MS, Tourette's and substance misuse.

[Shumbah in reply to Hidden]

Professor John Winkleman says that Tourette’s and itching are like RLS.

I wished I had asked him more on that subject.

Prof Nutt is Amazing and to take the time to respond to me emails

God bless him.

[Sampsie in reply to Hidden]

Have you had your appointment yet? Mine is tomorrow.

[Hidden in reply to Sampsie]

Mine WAS for the 5th of September but they forgot to get the medical history from my GP so its now the 25th.

Best of luck tomorrow and if you would be so kind would you drop me a little PM and let me know how you got on/what you were asked?

[Sampsie in reply to Hidden]

That's frustrating. Yes, of course, I'll PM you. Quite nervous!!

[Hidden in reply to Sampsie]

As they do around these parts- I'll light a candle for you!

Ádh mór = Good luck.

[Sampsie in reply to Hidden]

I do that for people too! Thanks Raffs. Literally got butterflies.

[Hidden in reply to Sampsie]

What time is the appointment?

[Sampsie in reply to Hidden]

11.30am. I'll hopefully PM you this afternoon, headache and energy permitting.

[Joolsg in reply to Hidden]

Ha ha- mine was 13th - now 19th. Clearly NHS doctors are slow to send the required info even though I have been asked to pay £25 for the letter.

[Hidden in reply to Joolsg]

I have been given my notes to scan and forward on myself. Its a pain in the a$$ but on the plus side no money was asked for. A morning at the printer awaits....

[Joolsg in reply to Hidden]

My files are about 10” thick ( all the MS stuff etc) so don’t think they’d let me near them. I may be waiting even longer for my appointment!

[Hidden in reply to Joolsg]

I have some very small text to go by and only a snap shot.

I have learned I was meant to have a couple of different scans/tests which I didn't get and 1 Dr recons I don't have RLS as it doesn't go away when I move. Big clap for another top notch expert with their finger on the pulse and brimming with knowledge. I suppose now all that pain and suffering will disappear - lucky me.

(God damn it I hate this planet sometimes!!)

[Hidden]

Thank you so much for sharing. IF this doesnt cause daytime drowsiness then it would be a winner for me, all other meds i have tried here in the UK have all caused me drowsiness during the day. I have saved your post . I have doubts it will be allowed when i ask my doctors about it, but i can try. x

[Shumbah in reply to Hidden]

If you need my medical letters from Professor and doctors in the US Etc send me your email address 🙂

[Hidden in reply to Shumbah]

Thanks not sure if any if my doctors will look at them . Doctors can be touchy when you try to show them anything they dont know about. I if need them i will PM you my email address

[Hidden in reply to Hidden]

"Doctors can be touchy when you try to show them anything they dont know about"

And winner of the award for the Health Unlocked understatement of the year goes to.......

[fchrist in reply to Hidden]

I second that nomination!

[Hidden in reply to Hidden]

Ahhh thanks i never win anything, I accept.!!!

[Sampsie]

Thanks for the information. You're lucky you can get Buprenorphine. My consultant wouldn't give it to me and has prescribed Oxycodone. I am not sure if it is the short acting one either so I am waiting to see what he has given me. I'm in the UK. Perhaps this will be right for me, time will tell!

I'm so pleased that this has been so amazing for your quality of life and sleep. That's awesome.

[rkatt]

I had have a phone appointment with my doctor on the 23rd and will ask for this, while silently praying and whooping and jumping over a fire and waving a four leaf clover. If she says no I’ll ask for Tramadol to be put back on my prescription now I’ve come off 20mg Oxycodone which put me to sleep and killed whatever joy I had left, while scarcely helping with RLS.

Thanks!!!!!!!

[Shumbah in reply to rkatt]

I too shall wave my four leaf clover 🍀 and pray you ,let me know when you are successful.😃

[rkatt in reply to Shumbah]

Thanks!! I will!

[Hypervibe]

I am experiencing DAWS now. I have been on .50mg Mirapex over 20 yrs. I have slowly reduced to .12mg. An email with your Dr letters would be awesome! My GP is very open to information. I plan on being completely off Mirapex by Thanksgiving . My source of education & comfort comes from this community of RLS friends. I live in Texas & see a neurologist from UTSW. I have suffered severe side effects from Mirapex so I would greatly appreciate your email. Thanks!

(Email address deleted for your own safety by Kaarina - admin)

[jenki2]

I am so pleased for you.

Thank you for the recommendation!

I will definitely look into this in the future.