I'm really struggling with Premipaxole withdrawal and I'm going to ask my doctor for Temgesic as it sounds so wonderful.
So my question is, how many sufferers in UK actually receive this from NHS doctors and how effective is it?
Thanks for all your support now and in the past.
best wishes to all out there, Puzzler1 (or should that be Puzzled one!)
I await with unabated breathing!🤔
Hi Madlegs
Thanks for the interest. It was a slow start but seems to be hotting up now! Maybe all sufferers in UK should deluge their GPs and specialists with requests and get the ball rolling.
best wishes, Brian (Mr Puzzler - Mrs Puzzler is in a pretty bad way at he moment so I'm doing her posts)
Sorry for the delay in responding.
Some members have been able to obtain buprenorphine in the US and Australia.
Temgesic, i.e. buprenorphine 200ug is licensed in the UK, but not for RLS. However as it is licensed for something then it is possible for a doctor to prescribe it "off label" in the same way that gabapentin or pregabalin are prescribed for RLS off label.
It's possible for a GP to prescribe Codeine for RLS, if they're willing.
It is recommended here (near the bottom of the page)
cks.nice.org.uk/topics/rest...
Targinact, i.e. oxycodone with naloxone IS licensed for RLS when dopamine aponists have failed. However, it would have to be a specialist prescribing it, a GP won't.
Whereas codeine and targinact are recommended/licensed for RLS, Temgesic isn't.
No harm in asking your GP.
.
It is also available in Austria and Germany, but only off label as Manerva wrote. And the doctor must be willing. If somebody has no history whatsoever with opiods and furthermore no success with dopaminagonists and ligands, I really cannot understand why doctors make it so difficult. Perhaps they think they have to supervise and they are not willing to do this.
I would print out the many reports of the excellent effects of Temgesic in very small doses (for me it is 100-200 mcg !!) and show to neurologists.
And as far as I can see Temgesic does not cause ostipation - which is a great advantage. And if the insurance is not willing to pay, I would even pay for myself (here it is not so expensive and costs less than dopaminagonists).
Thanks for your reply, that's very interesting and adds more weight to the argument. I don't why the NHS is so far behind other countries. If you're dying, it's great - if you're only suffering, it's pretty dire.
So how is your RLS now, compared to it's low point?
Very best wishes to you.
I have been taking Temgesic 100 mcg to 150 mcg for 2 months now ( 1/2 hour before bed) and slept each and every night. No RLS at all.
Only a slight RLS feeling in the afternoon or evening, which may be caused by still reducing the Pramipexol bit by bit. I am now at appr. 0,05 mg.
Just now I have to take antibiotics (teeth). Normally, antibiotics would enforce my RLS and would not let me sleep at all. But not now. Temgesic seems to cover it.
To answer your question: the comparison is easy. Heavy RLS every night und less in the afternoon/evening with Pramipexol, Neupro, Gabapentin and Pregabalin (all tried at different times). And none now. It seems like heaven and I hope it remains like this. The only negative side effect is a certain sleepiness during the day - but I can cope with it and maybe it disappears when the Pramipexol is weaned off altogether.
Hi Hausbauer,
That's fantastic. Thanks for your very useful reply. I'll pass it on to my doctor and hope for success.
All the best.
Hello again
Do you know of any other sufferers who found success with this. My doctor is asking for evidence before she considers prescribing Temgesic and there are not many examples on the RLS forum. Or if you know of any European studies from your country.
Thanks again.
Over the last 2 years I have come across Buprenorphine several times. Mainly in the answers of Dr. Buchfuhrer, California, on the website rlshelp.org - there many of his answers to questions from all over the world are shown (click on the two latest numbers). He uses Belbuca which is a film to apply in the inside of the mouth, but this is not available in my country. The important thing is the active ingredient which is Buprenorphine. It tends to make the least side effects of all opioids and is therefore preferred by Dr. Buchfuhrer and others.
He also answers your questions usually within one day, his email address is somno@verizon.net.
With regard to studies I would ask the member of this forum "Shumbah" who knows everything about Buprenorphine and can surely tell you about studies. I would advise to read the posts.
I have written down the names Prof. Christopher J.Earley from John Hopkins or Dr. Allen (Rallen6@jhmi.edu) who seem to have made studies. When you google these two you will surely find something.
My neurologist refused to prescribe opioids, but I found a doctor who knows me very well and he did some research on his own and prescribed. He knows that I want to keep the doses very very low and will not raise it more than necessary.
Good luck to you.
Hi, Thanks for your latest reply. I'm going to use all your comments to build our case. I was hoping for some European studies because I think our doctors it the UK have a general belief that the Americans tend to over prescribe their drugs and the UK doctors don't want to follow their lead. But that's just my interpretation. That's why your experience in Austria and also others in Australia are so important. However I am using Shumbah's posts because they are in such depth although she seems to reject Temgesic as being too weak!
I'll let you know how we get on. Thanks again
Hi Manerva,
Mr Puzzler here as Mrs Puzzler is really struggling at the moment. Thanks very much for your reply. The lady looking after Mrs P is a 'Consultant in Healthcare for Older People and General Internal Medicine/Clinical Lecturer' so do you think we might have a better chance than with the GP? We are supposed to be having a telephone appointment with her tomorrow - hence the question.
For some reason Mrs P's RLS has really deteriorated over the last week and she's barely sleeping at all and getting no relief through the day. She's down to 3 premipexole and the reduction from 6 hasn't been too bad but recently it's been totally hellish. She's falling back on the Madopar (2 tabs) to get a couple of hours relief but she knows it's not the wise thing to do. She's just desperate. The consultant is fine with starting gabapentin (although it's not actually been prescribed yet) but I just don't think it's going to do the trick in the short term. If there's not some immediate relief soon, I just don't know what she's going to do.
If the call comes, I'll let you know how we get on.
Thanks again for all your help
Sorry to hear Mrs P is struggling.
If pramipexole withdrawals are severe, she may be reducing it too fast. The slower, the better.
I reduced from 0.75mg pramipexole over 10 months. I reduced in steps of half a 0.125mg tab every 4 weeks. That worked well for me.
It does sound as if the consultant will be very sympathetic generally and hence open to discussing treatment options.
Bear in mind that she may not be terribly familiar with treatments for RLS especially innovative options such as buprenorphine. It would help if you had some information to hand. I suggest you look at the posts made by Shumbah who is a great advocate for buprenorphine.
Also, as Jools suggests, try to discuss iron therapy with the consultant. Here's a link to some information about this.
sciencedirect.com/science/a...
Hi Manerva,
I've just posted a general question requesting information on trials and success stories re Temgesic 200 to send on to Mrs P's consultant but thought I'd ask you directly as well because of your broad experience.
Also to thank you for your last reply. Mr's P has been reducing her pramipexole very slowly (3 tabs in 9 months!) but she still gets horrible flare ups from time to time.
On a positive note the consultant has agreed to arrange an iron transfusion! I think her last ferritin result was about 83.
Thanks again
Great news about the infusion.
Shumbah is the member to contact about buprenorphine, I have no experience of it.
I am about to write to my neurologist at King's to ask for it because my GP refuses to prescribe anything for my RLS unless the Neurologist confirms it's acceptable. King's are not known for forward thinking on RLS! I can but try. Good luck asking your GP.
I'd like to see RLS UK take up the initiative and start campaigning for methadone, Temgesic and iron infusions. The US RLS foundation has transformed into a campaigning group and have funded research into new treatments. That's what RLS UK should be doing but we need more members and more funding.
A warning to everyone: I'm in the US. Found a dr both licensed and willing to write script for buprenorphine. Was told he was familiar with RLS; also told him of my 50 years of RLS. However! I took one tablet of prescribed dose; within 15 minutes, extremely dizzy and 45 minutes later, began 36 hrs of vomiting, extreme dizziness, and significant headache (no fever). Couldn't stand for more than a minute without vomiting. Why? Because his recommended dosage was 1-2 tablets--and each tablet was 8 milligrams! That is hardly a microdose that some of you have been taking successfully. Safe doses are in the MICROgrams. Please be very careful about dosage. Last night, after first bad reaction ended, I took second dose, which was 1/8 of a tablet, so, approximately 1 mg. Legs didn't bother me (so buprenorphine does work!) but I awoke with enough nausea and dizziness and cognitive issues that I could not drive safely, so had to cancel plans for today. Learn from my mistake. I should have checked, but trusted dr. Start low dose then if necessary, increase. Now I have to wait to get in to see dr for prescription for lower dose, since can't cut tablets into smaller pieces without reducing to dust.
My God! That’s 80 times the amount I’m taking!! Thank heavens you didn’t take 2 tablets.
I hope it works for you when you’ve settled on the right dose.
That is utterly incredible. If you had taken the two tablets, it's quite likely you would have had a "sudden death experience".
I'm surprised the dispensing chemist didn't intervene.
This incident should really be reported. That doctor is going to kill someone ,at this rate.
Is there a specialist in the uk for RLS?
Counties in UK where Buprenorph is not red-listed
NOW is the time for action in the UK-re "blacklisted drugs" This does affect you.
Recommendations please for NHS and private consultants in UK for RLS / Periodic Limb Movement / Sleep Apnea? 
PLEASE READ THIS: Sarah Blanksby is fundraising for RLS-UK, in memory of her brother Andrew, who passed away just a few weeks ago.
