A STRANGE AND MIRACULOUS CURE!

[Thursby]

Having RLS my ENTIRE life, I WAS taking practically every single OPOID and NEUROTROPIC drug everyone here is taking!! AND psychotropics as well...... a LONG list.

Then, LONG story short...I was put on BUPRENORPHINE forSEVERE FIBROMYALGIA.......and the LIFE LONG RLS was COMPLETELY AND TOTALLY ABATED. IT HAS NEVER RETURNED!!!!! GONE the progressively increasing dependency on analgesics GONE the MADNESS of BRAIN induced challenges TOO DEEP to expound, here.....and SEVERE side effects, NO HUMAN should be

subjected to. GONE, the psychotropics, added to control the side effects of the BRAIN sequelae.

I am NOT an addict. I have ZERO addiction history. This made it extremely difficult for the PAIN MD's to PROVIDE the drug, which is given to addicts, LIKE METHADONE...with the accompanying NARCAN........which I didn't need.

I have been on THE SAME DOSAGE of BUPRENORPHINE, for 12 years! THERE IS NO DROWSINESS!! THERE IS NO INCREASING DEPENDENCY! I took FLEXERIL 10 MG FOR INSOMNIA.

There ARE ODD symptoms NO ONE would expect. So, I have always wondered, "HOW is it affecting the physiology in HIDDEN ways.?" For example: NO YAWNING or SNEEZING. Maybe ONCE a year!! And THESE are almost EXPLOSIVE!!! ATOMIC.....and frightening. A PAROXYSM SO INTENSE, AND UNEXPECTED, IT TAKES YOU OFF YOUR FEET.

Right now, I have a sister in law, with SEVERE RLS....WHO SUFFERS TERRIBLY...

I UNDERSTAND TOTALLY. I GET IT ....I HAVE LIVED IT........AND HAVE BEEN

COMPLETELY RELIEVED OF ITS ABSOLUTE HELL.

Another friend, with a new diagnosis of PARKINSONS..........who has DEVELOPED these "strange and severely painful electric spasms in her legs............" And GUESS WHAT!!!!!!! DOPAMINE CAUSES RLS!!!!!!!! And her NEUROLOGIST DIDN'T KNOW THIS!!!!!!!??????????

I HOPE AND PRAY YOUR MDS. LISTEN TO YOU. TAKE THIS LETTER TO THEM!!! DEMAND BUPRENORPHINE!!!!!!!!!!!!!!!!! DEMAND A TRIAL OF

BUPRENORPHINE!!!!! I HOPE IT WORKS...........I PRAY IT WORKS!!!!!!!

THANK YOU.

[rls-insomniac]

Hi, there are a few of us on this forum who are already taking buprenorphine. For most people it works well in relieving RLS symptoms.

It's great to hear that buprenorphine has been working so well for you and for so long. That sounds promising for the rest of us. Out of interest what dose do you take?

It doesn't always work for me but my symptoms are so much better than before.

Buprenorphine affects everyone in different ways. Some of us feel drowsy, suffer with opioid sweats and constipation. These appear to be the more common side effects. But I'm prepared to put up with these for a better quality of life.

All that said, it's certainly a struggle to find a doctor who is prepared to prescribe it, despite providing them with evidence of buprenorphine's success in treating RLS.

[Thursby in reply to rls-insomniac]

MUCH constipation.....also medicated with LINZESS for YEARS..and using a Squatty Pottythe 9 INCH one helps......not the 7 in. I take 8mg every 12 hours, or twice daily. It's great knowing docs are listening!! MEDICARE had taken it away from patients and I have had to fight them twice!!!!!!!!!!!!!!!!!! It is an OUTRAGE. THANK YOU!

[Irmajs in reply to Thursby]

I’m shocked you found a doctor in the US that will prescribe it to you. Where do you live. Most won’t.

[Elffindoe]

Really great to hear that the buprenorphine is so good for you.

It is becoming increasingly popular for RLS.

Sorry to hear about your sister. It appears she has both parkinson's (PD) and RLS.

Just to clarify, if she does have RLS, then she has probably got the genetic disposition to it.

RLS is NOT caused by dopamine. This is misleading.

Dopamine or dopamine agonists used for PD are also used for RLS. They can treat RLS. However after time they can cause a condition known as augmentation.

This only happens for somebody with RLS. So I'd say if your sister's apparent RLS started occurring only after starting treatment for PD then she probably already had existing RLS. OR, it may not be RLS.

This is important because the treatment for augmentation caused by a dopaminergic agent is to stop the drug. If you also have PD, this is a problem.

The painful and electric spasms sound lke a neuropathy. She ought to get checked for what's causing this nerve pain, it's not PD and it's not RLS.

[Thursby in reply to Elffindoe]

I will report your comments to her for her MD to figure out!! This was all new to her post treatment with Dopamine. THANK YOU FOR your INFORMED reply. Randal

[Elffindoe in reply to Thursby]

Just remember that dopamine does not cause RLS. For somebody newly diagnosed with RLS, dopamine, or rather dopamine agonists are a treatment. This is true for anybody even if they do not have PD.

However they can also go on to cause augmentation, a worsening of RLS.

Because of this dopamine agonists and especially dopamine are no longer recommended first treatments for RLS.

Also be aware that RLS like symptoms can be caused by other things which aren't RLS.

Your sis in law should discuss this with her doc.

[Joolsg]

Delighted it's still working. Another member posted about Buprenorphine completely resolving her severe RLS and as a result, several of us have managed to get it prescribed in the UK. Like you, I have found it miraculous. I do have the occasional early evening RLS ( as the previous evening's dose wears off) and I have opioid sweats but to sleep 7/8 hours at night is just bliss.I'm currently trying to raise the funds for a UK trial by Prof. Chaudhuri at King's College. He's agreed to do the trial if I can raise the money. Here in the UK, the authorities will not accept evidence from overseas trials. The NHS will only prescribe a med if the necessary trials are done here. GPs and neurologists can still prescribe it but 'off licence' and they are at risk if there are any problems.

I would also be interested in the dose you're currently taking. I'm on 0.4mg but suspect I may have to adjust that over the next year.

[Ebi1909 in reply to Joolsg]

Science should be science and evidence should be evidence regardless of any border, language, or personal matters!

[Joolsg in reply to Ebi1909]

I agree. Just wish the NHS, NICE and MHRA agreed too.

[Elffindoe in reply to Ebi1909]

I agree. I notice that NICE do refer to evidence from America and Spain however.

[Hidden in reply to Joolsg]

Good Morning!How are you raising the money for the trial?

Please let me know.

Many thanks

[Joolsg in reply to Hidden]

So far I've written to grant/funding agencies and 2 pharmacy companies. No luck. As there are 100,000 with severe RLS in this country, if every one of them gave £1 , we'd have the money. However they're spread over this site and many small Facebook help groups so reaching people is nigh impossible . When trying to get people to join in the campaign to get RLS taught to doctors in the UK, I hit the same brick wall. Hardly anyone bothered to use the template letters and write in.I have no idea why the RLS community is so disparate and seemingly disinterested in campaigning for change/help. It's a complete mystery.

I imagine if I post on here and on the various FB pages, I'll come across the same disinterest.

However, I'll keep plodding along, searching for ways to get the money. Most drug trials are funded by the big pharmacy companies but as Buprenorphine has been around for decades and is cheap compared to the dopamine agonists, there's no financial incentive/profit for the drug companies.

I anyone knows a wealthy RLS sufferer, point them my way!

[cicek in reply to Joolsg]

Sorry I'm not wealthy but happy to donate what I can if it will help. I don't know why people are not willing to use the template letters etc. but unfortunately we seem to have become a society that thinks "let some else do it". Sad really but I think that's the truth of it with a lot of things. You are doing a brilliant job so don't them beat you down. We need the likes of you.

[Joolsg in reply to cicek]

I'll keep kicking at the closed door but may have to throw in the towel if I get nowhere. Thanks for the offer, if I set up an official fund raising page/site I'll post on here and ask those on FB to do the same.

[cicek in reply to Joolsg]

I'd be very happy to do that.

[Hidden in reply to Joolsg]

Hi Jools, i'd be happy to donate but if i'm recalling correctly, when i read your post about the study, i assumed it was a UK-specific initiative. If people in other countries are able to donate towards it, count me in.

[Joolsg in reply to Hidden]

You're correct it would be UK only. Thanks though Amrob.

[gentoorax in reply to Joolsg]

Is there not perhaps so go fund me crowd funding site you can set up for this? I've currently tried everything on pregabalin at the moment and have been for some time, I know it works for a lot of people but it doesn't work for me. I have in the past only had success with cocodamol, tramadol and the occasional DA. Would love to see this get some funding as I think bupren would probably do the trick for me, I hear it has help loads of people!

[Joolsg in reply to gentoorax]

I suspect raising £100,000 via crowd funding won't get very far. For some reason, the RLS community doesn't respond well to campaigns etc.There are apparently 16,000 members of this RLS community but I think around 2,000 are outside UK. Even if every one of those 16,000 gave £5 we wouldn't reach the target. There are hundreds of Facebook groups but they all have strict rules about joining/posting.

The reaction to the Campaign in Summer to get RLS taught to doctors in the UK was a complete failure. Hardly anyone joined in and sent the template emails.

I know a crowd funding initiative would have the same result. About 100 people would probably contribute and we'd raise less than £1000.

I have to try the usual medical trial funding routes but, as RLS isn't considered serious enough to be taught at any stage during medical training, it'll be an uphill battle.

If you have failed DAs and pregabalin doesn't help, you would benefit from opioids.

Have you asked your GP for Targinact? It would be hard for them to refuse. Show them the NICE evidence on Targinact for RLS. I also failed pregabalin and Oxycontin and Buprenorphine was the last option for me. You could ask your GP and I'm happy to forward emails from Prof. Chaudhuri, the UK expert on RLS, saying he has no objection to Buprenorphine. It helped persuade my GP to prescribe Buprenorphine on a 3 week trial basis.

nice.org.uk/advice/esnm67/c...

[HappyGreenBean in reply to Joolsg]

Hi Joolsg, have you tried UKRI for funding? ukri.org/councils/mrc/guida...

[Joolsg in reply to HappyGreenBean]

Thanks for that link. RLSUK doesn't fall in those categories but King's College Hospital does.I may forward it to Prof. Chaudhuri and ask if he'll apply for funding via this route.

[HappyGreenBean in reply to Joolsg]

This was my thinking. It's harder for orgs to get funding for a study. Thanks kindly for putting in the time and effort, it means a lot to so many.

[wantmysleep in reply to Joolsg]

Is it still worth trying to see where you get to? I am not wealthy but I am very happy to donate.

[Joolsg in reply to wantmysleep]

I'll keep trying official channels but if it fails, I may set up a crowd funding or legitimate fund raising site.

[Millersman in reply to Joolsg]

I think a fund raising site is a good idea and I'm sure there are many RLS sufferers in the UK that would chip in - I would.

[Joolsg in reply to Millersman]

Good to know. I'll look into it all.

[Thursby in reply to Joolsg]

let me know. Thursday

[Thursby in reply to Joolsg]

8 mg twice daily, 12 hours apart. Yes, it has doubled.......and I cannot go higher!

[Elffindoe in reply to Thursby]

I'm no expert on buprenorphine, but for RLS usually only low doses of opioid are used.

16mg of buprenorphine sounds massive to me. I thought doses are usually less than 1mg.

[Joolsg in reply to Thursby]

Whoa that's an enormous dose. 16mg a day. I'm on 0.4mg once a day. I presume your doctors agreed to the high dose because you also have severe fybromyalgia.

I'm glad you're getting pain relief & your RLS is controlled. Most RLS sufferers appear to stay on low doses ( under 1mg) for long periods.

[MightyPotato]

lol. yes, obviously buprenorphine works. it's an opioid! no idea what you find so miraculous about it. no more or less miraculous than oxycodone, methadone or tramadol. for some it may certainly be the better deal because it's not a full agonist. but i had even more side effects on it though.

[Joolsg in reply to MightyPotato]

There are at least 10 of us who had been on other opioids like Oxycontin for several years and were still suffering severe RLS nightly. Shumbah was one of them. She was prescribed Buprenorphine in the USA, having travelled there from Australia. It instantly worked, after years of Oxycontin and pregabalin doing very little..Tramadol did nothing for my RLS and it is the one opioid that causes augmentation. I had been on Oxycontin and pregabalin for 5 years and my IRLSS was 36/40. Buprenorphine has been miraculous. My score since starting it has been 0/40. Bup works on slightly different receptors to other opioids. It targets the Mu receptors. I haven't yet heard of

Methadone being prescribed here in the UK.

The US experts in RLS point out that different opioids work for different people.

Glad you're able to get relief on the other opioids but those with severe RLS on oxy etc need to know there are other options and not all opioids work in the same way.

I, for one, am glad someone else has posted about their success. It may reach someone who has been taking oxycodone or tramadol for years and is still suffering nightly RLS. There are many and Buprenorphine may help them.

That's the whole point of this site.

[cicek in reply to Joolsg]

I am very interested to read this response Joolsg. I have been taking Tramadol for years and it worked very well initially. Now I am augmenting on my DA and even the Tramadol doesn't help (although I could be a lot worse if I stopped it I suppose). If I get to see my GP I might mention Buprenorphine as a replacement for the Tramadol. If as you say, it's cheap that might help. I've had relief from Roprinorole for years adding Tramadol to the. mix but now slowly my med regime seems to be falling apart which I guess is what happens eventually. Fingers crossed I will get a phone call with my GP and I might have some success. That's what is so good about this forum - everyone has a different experience. I had never heard of Buprenorphine before. Thank you.

[Joolsg in reply to cicek]

Hope things work for you but..... a word of caution, while you're still on DAs most opioids will fail. Augmentation causes your D1 receptors to be over stimulated and excited and the only way to calm them is to get off Ropinirole ( and not to try other DAs). There are a few who have tried Buprenorphine while still on DAs and it seems to dampen the Augmentation for a short while but the intense RLS always kick back in.

So I would suggest getting off the Ropinirole slowly by 0.25mg every 2 to 3 weeks.

Withdrawal symptoms tend to settle around a month after the last dose of Ropinirole.

I wish I had better news, but sadly, once Augmentation has happened, those D1 receptors won't stop screaming until a month after you stop Ropinirole.

You may find you don't need any meds- some find that raising serum ferritin above 100, preferably 250 means they can manage med free.

If the RLS is still troublesome, you have Buprenorphine, other opioids like Oxycontin or hyrocodeine or the A2D ligands like pregabalin or gabapentin.

I wish you success in finding the right combination.

[cicek in reply to Joolsg]

Thank you. As I'm using the original meds I have (2mg XL) I've already cut them in half so will now try and cut that half into 2 x 0.50 mg doses then the same again for the 0.25mg. Do you think I should stop the Tramadol too? I'm not aware it causes augmentation and I think that's what's helping me sleep at the moment. What happens when all the Roprinerole is out of the system because the RLS will still be there. Does anyone actually manage taking nothing at all? So many questions I know but I literally know no-one else who has this awful syndrome apart from people on here. My son has mild symptoms as I used to, but I think he is in denial that his will get worse despite the fact that he himself is a doctor!!! I told him it's called burying his head in the sand. It's really good of you to take your time giving all this advice and I would like to thank you again for your help.

[Joolsg in reply to cicek]

Your son should get bloods taken. So often, younger people can completely resolve RLS by raising ferritin. The US experts are now looking for 250/300 as the required level & routinely give iv Injectar infusions to raise levels fast. This dramatically improves RLS for 60%, moderately for 20% but has no effect on 20%. Odds are favourable.In your case, because tramadol also causes augmentation, ask for Oxycodone to deal with the withdrawal symptoms as it doesn't cause augmentation.

When the Ropinirole is out of your system, there are 2 schools of thought. Dr.Earley at Johns Hopkins University believes everyone should stop ALL meds for a 10-14 day washout period to allow dopamine receptors to settle and assess the baseline RLS. This definitely makes sense but if you have severe RLS, it can be very difficult to spend 2 weeks completely med free.

The other approach is to accept you had RLS before Ropinirole, so you'll have it afterwards, so to start alternative meds 3 weeks before the last dose of Ropinirole. Most people switch to pregabalin or gabapentin.

These are taken at the same time and many people on here have done this.

Elffindoe takes pregabalin and it works for him, Madlegs takes Oxycontin.

Others take a combination of both.

It can take around 6 months to find a combination that works for you.

[CocoaMacaroon in reply to Joolsg]

Hello, Where can I read about the suggestions by Dr. Earley? Journal articles? Not seeing it while scrolling through Google. Thanks!

[Joolsg in reply to CocoaMacaroon]

Unfortunately, the 10 day wash out period that Dr. Earley advises is contained in a help sheet only given out to his patients at Johns Hopkins. I saw a copy of the Help Sheet and posted it on here several months ago.I have also heard Dr. Earley talk about the washout period in webinars run by the US foundation. His theory is that ALL drugs for RLS affect the dopamine receptors so he wants them to settle/reset before commencing new treatment.

My only problem with this is that it clearly takes longer for some people's receptors to settle so the 10 day period is arbitrary. I couldn't imagine getting through the hellish withdrawal from dopamine agonists and then having to wait at least 10 days until taking any drugs to enable sleep and the cessation of the creepy crawlies.

I attach the post where I photoed the Help Sheet.

Text

[CocoaMacaroon in reply to Joolsg]

Thank you so much for your helpful reply!

[Elffindoe in reply to cicek]

The usual UK recommended treatment for augmentation/failed dopaminergic treatment is to wean off the dopamine agonist and replace it with either gabapentin or pregabalin.

These are recommended first line treatments for RLS.

Although some members have been successful in obtaining prescriptions for high potency opioids, such as oxycodone. methadone, these are usually reserved for "refractory" RLS.

This is why so many people get refused a prescription for an opioid.

Hence, don't be surprised if your GP tefuses to prescribe buprenorphine. It may be worthwhile trying.

However, if refused, you can still request gabapentin or pregablin.w

see this link

cks.nice.org.uk/topics/rest...

[Thursby in reply to Joolsg]

I have read that long term use of Buprenorphine can cause ADRENAL fatigue or worse.... no one has mentioned this?

[Joolsg in reply to Thursby]

Oh great. Something else to look forward to. I googled this and can only find a mention of rats and one 39 year old woman suffering adrenal fatigue. She was on high dose patches for post operative back pain.At the moment I'll keep taking the Buprenorphine as that side effect has not been mentioned in Dr. Winkelman's opioid study.

[halperinchen]

Hi Thursdy, congratulation to your success with buprenorphine. I do have some questions to ask in order to help with my decision to find an opioid which doesn't give me the severe insomnia oxycodone gives. Would you please elaborate on "brain-induced challenges" for me to understand whether it gives you insomnia and how severe the insomnia induced by buprenorphine? The flexeril can do a good job to relieve it? This is very important for me right now because the oxycodone I am taking don't let sleep at all despite the Xanax and lyrics I am talking. Thanks for advance for your reply.

[Thursby in reply to halperinchen]

Now that you mention this, I have to report that I TOO experience extreme insomnia!! I wasn't putting it together with Buprenorphine! i have HD! AND fibromyalgia, both of which cause insomnia. I am trying various meds without success, psychotropics, OTC herbals, none are working!! Flexeril helps.

[RestlessC in reply to Thursby]

I guess your comment here is from 10 months ago, so maybe it’s ancient history for you, but nonetheless, they’re all things I’m struggling to figure out now. And, my goodness, there’s a lot to try and absorb/analyse here. I thought buprenorphine sounded like a good thing to investigate until you mentioned insomnia. Part of getting rid of the RLS is trying to also get a decent amount of sleep, so that doesn’t sound so positive. But, as a fellow fibromyalgia sufferer, I tuned in on your comment about that too, and maybe it’s a dumb question and something I should know, but what is HD?

[halperinchen]

oh by the way, does buprenorphine gives you constipation? How do you relieve it? How much dosage of it are you currently taking? Thanks.

[Thursby in reply to halperinchen]

8 mg now, twice daily....that is the highest dose. YES...I take LINZESS for constipation now. that one took a village, and very humiliating vortex of tests to prove i really needed it...

[halperinchen in reply to Thursby]

Thanks a lot for your help.

[Hidden]

Sounds like a winner. mdpi.com/2218-273X/11/6/816...

[Farmboy1]

What route and dose are you taking?

[Thursby in reply to Farmboy1]

8 mg. twice daily. orally

[Biscuitface]

Really happy for you re Buprenorphine. Please let me know if tablets or patches and what dose is effective for you ?