Methadone

[bedith6]

Hi Everyone. Has anyone living in the U.K. with severe restless legs been prescribed methadone.? If so what are the results.? I ask because I've been on Tramadol for about 2 years (4x 20mg at night ) and they seem to be losing their efficacy now. Any other advice gratefully received.

[Heatherlss]

I don't quite remember anyone from UK(in here) being prescribed Methadone. If you're able to, then its a huge plus. People across this forum who have been given Methadone have had excellent results. It seemingly is the ultimate medication for RLS.

If you are indeed, you might even want to suggest which doctor you visited. Many could benefit from that.

[Pippins2]

Sadly Bedith it would be a miracle if you got your GP to prescribe you Methadone for RLS in the UK .It isnt even used in general practice for severe pain .A pain clinic may prescribe it but when i asked -albeit it 10 years ago the doctor nearly fell off his chair .It is recommemded in the States , Canada and other countries by the RLS experts for refactory RLS but not a prayer here .I was prescribed Oxycodine for RLS by a Neurologist so that may an option .However i know that you are a lady not quite in your first flush of youth ha ha so the doctors are even more reluctant to prescribe strong opiates .No harm in asking though .Wishing you well Bedith you would expect some peace and respite as you get older .My mums improved greatly once she turned 80 but this is not always the case .Try for the Ocycodone or Targinact is now approved for severe RLS .Good luck -Pipps x

[Hoffie]

I am in USA and am enjoying major relief from RLS using methadone

[lenpharleyd in reply to Hoffie]

Same here. Low dose before bed time, 3-5ml liquid. After being on all the dopamine agonists for many years and going thru terrible augmentation, I have my life back being on methadone.

[TheDoDahMan]

A rare few doctors here in the USA have heard the news that low-dose methadone (5mg twice daily) is achieving spectacular results. I was lucky enough to find Dr. B in California.

[Parminter in reply to TheDoDahMan]

Hello DoDah, that divided dose is interesting, could you please elaborate? Timing? Tablet or liquid? Ifs and buts?

[TheDoDahMan in reply to Parminter]

Hi, Parmy,

Actually the prescription label regarding 5 mg methadone tablets from Dr. B reads: "Take half-a-tablet to two tablets by mouth 3 times a day as needed for 30 days supply." So basically, each patient may want to assess with their doctor, which exact timing and dosage would be most efficacious.

As each month's prescription contains 60 pills, 2 pills per day would be the average dose.

Often a tablet might be split in two using a pill splitter. Currently Dr. B has me taking one dose of 1 and 1/2 tablets, an hour or two before bedtime, with the other 1/2 tablet dose taken in early evening to palliate any onset tingles if you're sedentary for most of that time.

I believe that liquid methadone (at quite higher dosages) is mainly used to treat opiate addiction, which may be why there is still somewhat of a stigma associated with it among people (even many doctors) who have not kept up with their studies regarding this very useful medicine, especially as regards RLS sufferers.

Those who want to learn more are advised to google "Dr. Buchfuhrer - Mayo Clinic - opioid use for RLS". Again, this medicine is difficlt to access in the US, and near impossible in the UK, largely due to lack of physician education.

I have experienced exactly zero bad side effects at these dosages and I'm in my second year with this treatment.

[Parminter in reply to TheDoDahMan]

Thank you for that.

I take liquid methadone - and it does cause raised eyebrows, hoohah . It is very easy to titrate with a pipette. And it is cheap.

But following your information I will change my dosage regime to include a lunch-time dollop.

I have been completely covered by taking 6mg in the early evening, but lately I have felt the horrors start mid afternoon.

Thank you for the detail, I appreciate it. Parmy.

[TheDoDahMan in reply to Parminter]

Glad to help. I'm a 74-yr-old male living in Nevada. Do you mind sharing same info, as I wonder how you access the liquid stuff to take home. Of course, don't reveal anything you'd rather not! --DoDah--

[Parminter in reply to TheDoDahMan]

I live in Africa, one year older than you.

There are no RLS specialists, so I do all the work and take it to my GP.

Our GPs in RSA are very well trained, (although not in RLS), and unafraid to step outside the lines. Or at least mine is not.

He told me I would have some difficulty getting methadone, scrip or not, but now I have a pharmacist who trusts both me and my doctor. It was pretty hilarious.

The pink stuff is dispensed from a Big Brown Bottle, in the old-fashioned way. Glug glug. I use a plastic pipette from the art shop to take it. Very alternative.

I obtained a lot of my information from Dr B's papers and the RLS Foundation.

I had a disastrous time on dopamine agonists. I never slept, augmented almost immediately, and spent all my money on things I do not need - totally compulsive.

Does your methadone have a name?

[TheDoDahMan in reply to Parminter]

Not sure what you mean by "have a name". It's generic, labeled "Methadone HCL". Am guessing the HCL means "hydrochloride".

[Parminter in reply to TheDoDahMan]

Yup. I just wondered if Pharma had somehow got their expensive claws into it, but it would seem not. No-one has a patent, thank heavens, so it should remain inexpensive for all who need it.

[Ert223 in reply to TheDoDahMan]

Yeah I wish my neurologist knew about LDN before I was put on Norco 60 mg.

per day. If your on Opiods do not take LDN ...I took like .25 mg of LDN and it made my RLS pain a hundred times worse. From my understanding LDN is a partial block of the opiod receptor. The endorphins build up in the body and push past the partial blockage and you get relief of pain. But since my Doc did not know about it well. I find that Kratom works with the Norco...Kratom does not suppress your Respiratory System so you cannot overdose on it.

[martino]

The DoDahMan mentions Dr B. He has recommended methadone to me but, like you, I am in the UK. I had a neurologist visit on Tuesday where I had intended to raise this. In the event, because my problems are both Neuropathy and RLS I am being referred to a specialist in Neuropathy and also a pain consultant. The plan seems to be a multidisciplinary approach with a full meds’ review. Amongst other things I take 200mg of Extended release Tramadol which may have lost its efficacy. I suspect, like Pippins2, I may be offered Targinact but I will post again with the outcome and in particular the response to a methadone suggestion.

[Shumbah in reply to martino]

Might be worth mentioning Buprenorphine also

Professor John Winkleman recommended for me from Boston on my recent visit

I live in Australia.

[martino in reply to Shumbah]

I did wonder about this as I have read that for some it works well. It seems though that it, like methadone, will be stuck with the lack of precedent in the UK despite the fact that these opioids are very successfully being used in other countries.

[Shumbah in reply to martino]

Hi Martino

I have just been through the ringer in Australia trying to get Buprenorphine which one was prescribed in the USA it works like a dream

However Tengesic .02 is identical in compound they have prescribed 2 doses 4 times daily which is enough for my needs equals 1.6 mg I still works

My original prescription was 2 mg

I though I would mention as it may be a hack worth asking about

🙂

[Pippins2 in reply to martino]

Martino I await the response to your request for Methadone with interest.Good luck with your appointment x

[martino in reply to Pippins2]

Having been optimistic about the possibility of a neuropathy specialist and a pain consultant looking at my needs I am less optimistic now. Whilst it was suggested I would hear something “within 24 to 48 hours” after my appointment on 12th I had heard nothing by yesterday. I rang and was told that I would be given another appointment in May. It was as though the meeting on 12th had not happened! So much for my optimism!

[Gmc54]

I almost choked on my tea while thinking of what would happen if I asked my GP for methadone!!! I struggled even to get tramadol a couple of years ago, as he had never heard of it for RLS, and when I asked to try Targinact (which is allowed by NICE) he almost combusted on the spot! He almost shouted “absolutely not, no way!” I was quickly shown the door, and left disappointed.

If I ask for methadone he would probably explode.

[Ert223 in reply to Gmc54]

yeah some doctors are idiots...My neurologist wanted to put me on Methadone.

But I told him I would take a pass on it. In the USA with there new laws my neurologist cannot prescribe anything but tylenol 3 so I have to see a Pain specialist. Who of course knew nothing about RLS the first Idiot I went to wanted to to take away all my Norco/benzos and put me on a antidepressant see a cognitive therapist and physical therapy...yeah doc put a 38 caliber to my head. I ask about marijuana...he bragged about how he went to seminars...I said well get me on it.

He stated that those bums who work in the despinseries were completely low life assholes and he would not do it???? Then he gives me one script for Norco

and writes on the script the reason he is giving it to me is because I am a drug

addict? The pharmacist says I cannot fill this with a diagnosis like this. Had to take script back and tell shit head put RLS on the script...back to pharmacist then she says she still cannot fill it because she knew what the original diagnosis was.

So I have to take it to another Pharmacist who filled and said...try to get off of it if you can the politicians have screwed things up so bad...the pharmacies are afraid to fill it. It is 5 am so just rambling getting ready to take some more pills that have

completely destroyed my testosterone level. Ah what the hell...after all of this

being a christian I will probably end up in Hell for being a drug addict...if it is worse than RLS an eternity

of something worse than RLS. Well hang in there.

Oh the other stuff I use...Is kratom I find Bumble Bee to be the best...cant overdose on it. that and a Near Infrared light box..10 minutes on legs

Vitamin C and E supposed to enhance pain medication...based on cancer patients. And i use an electo stimulating device for pain in legs and feet.

Good Luck ...

Try another doctor...like a neurologist who knows what he is doing.

Most GPs know nothing about RLS...My neurologist had a hard time figuring it out.

[Joolsg]

Sadly not. Prof Choudhuri at King’s College hospital in London is one of the ‘top’ UK RLS experts and I asked his registrar why we cannot have methadone. He replied that there is no research in the UK ( yeah - we know!!!!) on RLS and methadone and NICE and local prescribing trusts can’t prescribe without research to back it up. I pointed out that there are US research articles but apparently the NHS won’t pay attention to them. If funding is made available, King’s would carry out research but....... as we know, the NHS is collapsing around us and RLS is at the bottom of a very long list.

Having said all that, most of our US friends cannot get methadone either. We need to mobilise, campaign and raise more funding for RLS research.

[Bukovina in reply to Joolsg]

Hi Joolsg, you can get LDN in UK and I think you will get the same relief like from methadone. I did a research about opioids for restless leg and I sawed positive reviews from the people who are use it. If you google LDN availability in UK it will come up.

[Joolsg in reply to Bukovina]

I know about LDN but it doesn’t have the same results as Methadone and it’s only available on private prescription in England ( it costs about £40 a month). I know at least 2 people on here who have had excellent results with it.

It’s certainly a drug I will try at some time in the future. I just have to be brave enough to get through OxyContin & pregabalin withdrawal before I try it.

[Bukovina in reply to Joolsg]

My partner was on ropinirole for 14 years but it`s not working anymore. He got a new meds a couple weeks ago (pramipexole) which I think as bad as ropinirole..

[Joolsg in reply to Bukovina]

It is. It will cause augmentation quickly if he augmented on Ropinirole. Maybe he should try LDN - he can take it as he’s not on opioids.

[Bukovina]

Hi Joolsg, you can have a look at this video which helped me to know a bit better about LDN

ldnresearchtrust.org/dr-leo...