If you take a look at my post 'Thought for the Day' you'll understand the context of this letter we sent to Mrs P's consultant.
I'm urging suffers to write down their experiences and send it to their doctors.
We sent this as an email together with the evidence for Temgesic success stories.
I'm hoping the picture I've painted (not exaggerated or embellished) is enough to treat our request seriously. (names have been changed)
Dear Dr Goodheart
Thank you very much for calling yesterday.
I have tried to collect together some relevant examples of successful use of Temgesic 200mcg for RLS relief. I believe that you plan to share this with your colleagues so I’ll add a few words about Linda’s history and condition.
She has suffered with RLS or Willis-Ekbom Disease for around 20 years. At first it was just a nuisance but over the years it worsened. Eventually Dr Retyred in Castorbridge prescribed Pramipexole. This started on a low dose and was gradually increased to a max of 6 tablets as the symptoms worsened.
Linda thought the increase in tablets was due to the body becoming accustomed to the drug but no one had explained about augmentation.
The symptoms have become much worse with horrendous consequences. The symptoms spread to include the arms as well as the legs and become much more painful. The symptoms all increased in frequency and extended over a longer period of time. She is now affected for about 20 hours out of 24.
Now at any time she rests she is soon in agony and has to move her legs. It has completely destroyed her quality of life.
After joining the RLS-UK forum we quickly became aware of the phenomena of Augmentation and Linda started to reduce her dose of Pramipexole. Advice from the forum says this should be done very slowly to reduce the horrible and distressing withdrawal effects.
The reduction of the first 2½ tablets didn’t cause much additional problems but now the reduction to 3 tablets is very hard and the symptoms are terrible.
Through the day Linda can only rest for very short periods before having to get up and move her legs by pacing or flexing or running on the spot. This relieves things until the next attack in 5-10mins time. She takes the pramipexol at about 7.30 – 8.00 pm. This takes a few hours to work and then at about 11.00 she can sleep relatively quietly for a couple of hours. After about 2 - 2½ hours the RLS breaks through and wakes her up. Shortly after this she has to get out of bed and has to pace, walk, run on the spot and wave her arms to get relief. Now she is unable to sleep any further through the night and lies awake moving her arms and legs and then getting up trying to get relief from this horrible disease.
When she is so distressed that she just wants to die, she might take 2 Madopar and get 1½ hours sleep in the early hours. The trouble with Madopar is that the augmentation is worse than with Pramipexole so every tablet taken is a backward step.
She has described the pain to me on many occasions. It’s not a stabbing pain associated with a wound or a cut but it is torturous agony. It’s more like a slow electric shock. I liken it to an old thriller where the spy has been captured and strapped to a table with electrodes attached. The baddies want information. They very slowly increase the voltage waiting for the spy to spill the beans. He grits his teeth and resists. He’s in agony. They turn the voltage off. Then they start the process again and again. The spy knows what’s coming. He knows it’s never ending. The agony is endless and unceasing hour after hour. He is tough. Finally he can stand no more and beaks the cyanide capsule in his back tooth. Blissful release.
I hope you can see the analogy here.
Linda’s RLS is now so bad with effects of Augmentation cause by Dr Retyred’s prescription that it has become Refactory RLS.
The Pramipexole doesn’t work and in light of recent evidence should never have been prescribed for long term use. The Madopar she uses, is for emergency use only, perhaps to get her over a journey and in itself, causes Augmentation.
Gabapentin and Pregablin may help in the future but will not be effective until the Pramipexole is completely out of her system which will be in about 6 - 7 months time, hopefully.
Dr Jobsworth has prescribed sleeping pills but she has tried these and the RLS breaks through. I have seen her struggling to get out of bed in a stupor and move her arms and legs weaving about all over the place. She has arthritis in both feet and her balance is poor at the best of times. She’s 74 for heaven’s sake and shouldn’t be subjected to this. I think an increase in dosage would be dangerous and risk a serious fall.
She takes magnesium and has undertaken a raft of ‘alternative’ supplements and lifestyle changes over the years which are suggested by various sources. She has tried to find triggers such as caffeine, alcohol and sugar but to no avail. The iron transfusion arranged by Dr Goodheart may make a slight improvement but is unlikely to overcome the current problem. However any improvement is welcome.
And so that brings us to the request for Temgesic 200mcg. We are aware that there is a reluctance to prescribe opioids at this present time, which is a shame because this one is a very low micro dose and is particularly effective.
Linda is not susceptible to becoming addicted or raising the dosage of any tablets. She tends to shy away from medication and only takes what is absolutely necessary to function in a reasonable fashion. Neither she or I have ever taken any recreational drug, not even a puff of cannabis in the ‘60s. The sad reality is, that Doctors wouldn’t hesitate to prescribe an opioid a hundred times stronger to a drug addict.
Linda’s quality of life is about as close to zero as you can get. The constant sleepless nights is taking a terrible toll on her health, well being and mental health. Add to that the constant agony of her condition and the fact she can’t do any of things that other people take for granted. She can’t lie in the sun on a lounger, she can’t sit in a cinema, relax in a restaurant, go to the theatre. She can’t even go and see her grandchildren perform in school productions because of the fear of having to get up and shuffle along the row of seats disturbing other parents. And as you know her greatest wish is to visit her ageing sister in Australia.
She can’t relax in front of the TV, put her feet up on the sofa or have an afternoon snooze. Not ever. She has to constantly rub her arms and legs to get some relief, move her arms and legs, get up and pace about etc etc. There’s not much laughing and joking in our household which is a shame because 5 years ago we used to have a lot of gatherings and parties. Linda is an excellent cook and we used to entertain regularly. But not now.
Just take a few minutes to take that in and put yourself in her shoes. Not being able to relax in any circumstance. To constantly have to move your arms and legs to get relief. You can’t go and stay with friends because you’re up all night. You’re constantly tortured by painful sensations. And worse of all, is the fact that nobody really knows what you are going through and they just don’t Get It!!
The only relief you get is when you are standing and moving on your arthritic feet. Not much of a life for a 74 year old lady who just wants to rest up a while.
We’ve already sent you descriptions of how bad the mental torture is during the sleepless nights so I won’t repeat myself but I’m sure you get the picture.
Given that all other medication has failed, we believe that there is a very good case for prescribing Temgesic 200mcg to give Linda the relief she so badly needs.
We are aware that there are prejudices against prescribing opioids but in Linda’s particular case and the fact this is a micro dose used widely in other western style countries in the treatment of RLS, we ask you to go against the usual trend and agree to her request.
And as quickly as possible please so Linda can see there’s some light at the end of the very dark and very long tunnel.
Below are some examples I promised.
Thank you for your understanding
Kind regards
Mr & Mrs ------------------
(could you please acknowledge receipt of email – thank you
Temgesic 200mcg sublingual tablets.
Evidence to demonstrate success in treating Restless Leg Syndrome / Willis-Eckbom Disease.
Temgesic 200mcg is successfully used in Australia, America, Germany and Austria to treat RLS.
The following are excerpts from The UK RLS forum, which is a remarkable collection of personal experiences and medical advice from around the world. Members give each other help and encouragement and pass on latest developments.
RLS-UK forum is on the Healthunlocked.com website.
This is a post from ‘Hausbauer’ in Austria (hence the accent)
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.
And as far as I can see Temgesic does not cause constipation - 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).
Hausbauer’s reply to my request for more details
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.
This is a post from ‘Jules1953’ in Australia
Last night I commenced Buprenorphine 200 micrograms (As hydrochloride)
In Western Australia it is sold under the label Temgesic Sublingual Tablets.
It is a controlled Drug here in Western Australia so possession without Authority is illegal.
My Doctor went through the appropriate channels to get me the necessary approval. I have had RLS for 49 years and all other medications have been exhausted.
The tablets are dissolved under the tongue. They come in very small doses and I took 3 tablets over a 1.5 hour period after going to bed last night.
So that is less than 1mg of the Buprenorphine.
I immediately stopped all my other RLS medication last night and commenced the Buprenorphine.
I was taking :
600mg Gabapentin
5mg Endone (oxycodone)
0.250mg Sifrol (pramipexole)
It took me a while to get to sleep but once asleep I slept through to 6.00am
I then stayed in bed till 11.00am sleeping on and off with no RLS symptoms and no jerking.
I will keep you up to date with my progress.
Update after 3 days.
Hi Manerva, I wanted to let you know that you were right about suddenly stopping the Pramipexole and Gabapentin - cold Turkey. I woke up this morning not feeling very well. So I took 300mg of Gabapentin and 0.125 of the Sifrol. Which is half of the dosage and felt better for it. I will come off these slowly now and continue with the Buprenorphine.
Thanks for your wisdom. I will keep you updated. Kind regards Julie
This is a post from Joolsg in response to a to a very bad sufferer in the USA
I feel your pain & rage. Where are you in the USA? This is a UK website but we do know of good doctors in the USA and the USA RLS foundation is campaigning for opioids for RLS & has funded a large study on safe low dose opioid use. Latest report below. You could consider joining- it’s $35 pa and there are free webinars by RLS experts. Dr Buchfuhrer is speaking on 10th September. Dr Winkleman spoke on ‘Safe treatment of RLS with opioids and a summary is included in the latest RLS magazine ‘Nightwalkers Summer 2020.’ September 23rd is RLS awareness Day and the US foundation are campaigning for opioids to be available for RLS.
The opioid study can be accessed below and if you print it off you could try discussing with your main doctors. Better still, find a knowledgeable doctor who will prescribe opioids.
There are several Centres of Excellence in the USA - Johns Hopkins in Baltimore, South California Clinic in Redwood are two I know of. Dr Glen Brookes in NY prescribes Buprenorphine with good results.
Post from ‘Shumbah’ from Australia/USA for UK RLS sufferers
(note. she is a very wealthy lady who has tirelessly researched and visited specialists to get her RLS cured – and she diligently passes all that experience on to the forum.)
This week I received an Email from Professor David Nutt,
Buprenorphine in the form of TEMGESIC 200mcg is available from your GP in the UK, 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.
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 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 their old meds too 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 the old drugs 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 me. I was 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, Professor 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 because it is a lot cheaper for Americans. Australian Doctors have zero clue about RLS and treatment they are still stuck on Sifrol (pramipexole).
I recommend 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 don’t ask your doctors history.
Professor Nutt from the UK says no specialist appointment required just ask your GP for 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 don’t work this might be a good option for you .
I hope this helps some of you good people of the UK
Responses from the Forum
Madlegs 1
Great job.
The pressure is mounting.
I love the way all the contributors are being so aware of GPs limitations in being allowed to prescribe class ? Opiates/ drugs.
And how they are all being firm and respectful in their interactions with the GPs.
This is true progressive democratic action.
Keep it all going👍😎
Dodahman
Indeed, Madlegs! There is an incalculable amount of suffering going on with RLS patients because of decades of hysterical stigma against the proper use of opioid remedies.
Buprenorphine
Coming off Temgesic and back on to Ropinirole
Update on first visit with Neurologist
Dipyridamole didn't work for me
