Neurologist and dr won't renew script for buprenorphine

My neurologist and dr won't give me a script for buprenorphine for my restless legs as they want me off opioid. I said that buprenorphine works, the neurologist said eventually my legs would get worse on this, but I have heard that this keeps working. It is criminal, what can I do.

[BennyBolt]

Extremely sorry for your distress I have had Restless Legs for many years and it has got worse since I had major surgery on my bowel in January My new doctor won't even discuss Ekbon Syndrome because he tells me he doesn't know anything about Ekbon Syndrome I have been waiting for a Neurologist for over a year I am in the UK Best of luck with your situation William Henry

[SueJohnson in reply to BennyBolt]

You may need to pay and go private. It's ridiculous to wait over a year and your doctor to say he doesn't know anything about RLS. Have you sent him a copy of the Mayo Clinic Updated Algorithm on RLS which will tell you everything you want to know including about its treatment at Https://mayoclinicproceedings.org/a...

[BennyBolt in reply to SueJohnson]

I saw my doctor app three weeks ago I took the relevant articles from the Mayo Clinic and others He wouldn't read them still telling me he knows nothing about RLS My mother who is dead now had RLS for many years and her doctors didn't really help her Thank you William Henry

[SueJohnson in reply to BennyBolt]

Definitely go private.

[Madlegs1]

Your neurologist is a Numptie.

He/ she is also incorrect . Bup at low dose won't augment or be tolerant.

Mind blowing ignorance.

Can you contact shumbah on this site ,for how to get Buprenorphin in Oz.

[Loopylegs in reply to Madlegs1]

I agree, an absolute Numptie!

[ChrisColumbus in reply to Madlegs1]

Agree: Shumbah

[Joolsg]

Tell them they're incorrect. These drugs cause tolerance in pain patients but NOT in RLS patients.The research is out there. The USA has been running a trial on opioids for RLS.

Copy attached.

Show it to your doctors and also contact Shumbah to see if she can provide any contacts. She's been campaigning in Australia for years on this.

Shumbah also has a list of people on Buprenorphine and the doses.

I've been on 0.4mg since June '21 and I haven't increased the dose. It hasn't stopped working.

It is criminal. Also show them the post on here headed ' a sad story'. Rosie died because of medical ignorance, lack of teaching about RLS and failure to get her off dopamine agonists. As pregabalin and gabapentin don't work for many of us, opioids are the ONLY class of drug that helps.

Do we have to start taking heroin illegally, become drug addicts to get access to methadone and Buprenorphine???.

Someone please make it make sense.

massgeneral.org/rls-registry

[Hidden in reply to Joolsg]

The buprenorphine was also controlling my nerve damage sensations in lower spine as well, now they are back with vengeance. It feels like someone has a tens machine on high attached to you....driving me insane

[Joolsg in reply to Hidden]

It's just so infuriating. Control your RLS and your spinal damage and you will sleep and rest and recover. Refuse to treat it and you will suffer and lose sleep. You'll then develop co morbidities like depression, anxiety, high blood pressure, heart disease and diabetes.Treat the RLS and you reduce the cost of other meds and healthcare to treat the co morbidities.

Is there another neurologist you can see?.Did you contact Shumbah?

This help forum is based in the UK so we don't know much about the Australian health care system or where the knowledgeable doctors are based.

[Hidden in reply to Joolsg]

yes, I have contacted Shumbah......yes have depression and anxiety from all this......scared I can't live with this....don't want to d*e but........

[Joolsg in reply to Hidden]

Totally, totally understand. One other possibility is to contact a sleep clinic as their doctors are more up to date with RLS.Or, as a last resort, a local drug addiction clinic. The doctors and nurses at addiction clinics are more knowledgeable about RLS than other doctors because it's a symptom of opioid withdrawals. They may be able to continue your prescription of Buprenorphine.

It is an international disgrace that RLS patients are so poorly and badly treated.

Buprenorphine is effective and safer than other opioids because there is less risk of abuse, and it has a lower risk of causing respiratory depression.

I just wish doctors would read the research documents we provide.

[Jumpey in reply to Joolsg]

I've been on codeine, tramadol and morphine fir RLS and tolerance has occurred on all three sadly.

[Joolsg in reply to Jumpey]

I'm sorry to hear that Jumpey. Have you asked for Buprenorphine? Often other opioids are ineffective because of the half life of the drug. They can cause mini opioid withdrawals in the day and night. The main symptom of opioid withdrawals is increased RLS.That's why methadone and Buprenorphine are usually very effective. They have the longest half life.

Tramadol and Oxycontin didn't help my severe RLS. I now know that I was having mini opioid withdrawals.

If you're in a part of the UK where Buprenorphine is red listed, only specialists can prescribe and continue the prescription.

[LanaCSR in reply to Joolsg]

Yes, I have been taking buprenorphine 2 mg 3xday for 3 years and it has always worked for me.

[SueJohnson]

Also print out and show your doctor the section on opioids in the Mayo Clinic Updated Algorithm on RLS which is the bible on RLS at Https://mayoclinicproceedings.org/a...

[Jules1953]

I recently had appt with Dr Richard Warren, a sleep specialist in Perth Western Australia. He is up to date with RLS research carried out around the world. And has attended RLS seminars held overseas. He is now prescribing Temgesic for me. Temgesic is micro dosages of Buprenorphine. I recently tried Gabapentin but it did not relieve my RLS. I think I have permanent damage to receptors in my brain from many, many years on ever increasing dosages of dopamine agonist medications.

Only opioid medication works for me now.

[Hidden in reply to Jules1953]

How much Temgesic did he prescribe for you?

[Jules1953 in reply to Hidden]

2 tablets before bed. 2 x 200mcg or equivalent to 2 x 0.2 mg

[Nanpat]

Hi, I am in Aus also…..what state are you in?

My gp prescribes Norspan patch for me for my severe RLS, if I can be of any help let me know 🙂

[Oscarcat63 in reply to Nanpat]

Hi, I am an Aussie as well,

In Tasmania...and opioids are a HUGE no no.

Ugh

[Hidden in reply to Oscarcat63]

we are so backward in Tasmania, and the healthcare system is in tatters at the moment.......

[Oscarcat63 in reply to Hidden]

Oh dear.I'm in Launceston.

It's pretty horrible re rls treatment.

And we can't swap doctors, e en if we wanted to !.

Iron infusions are only viven for IDA, and you have to be at the hospital for that !

As for opioids, tranquillizers etc, they are just a big fat no as they trat everyone as though they are a drug addict...even if you can get opioids the, the amount you can get is restricted and you have to get drug tested every 4 weeks. It's disgusting really...

[Hidden in reply to Nanpat]

Tasmania

[Nanpat]

Sorry to hear. My gp is understanding but cautious 😊