Buprenorphine

[Huntingleroy]

I thought I would share my story . I live in Gloucestershire and have suffered with chronic rls for over 30 yrs Dopamine Agonists worked quite well until I hit augmentation last year. Getting off them was hell and was often suicidal . This forum saved my life. Last month I finally got put on Buprnorphine 0.4 mg sublingual tablet by my neurlogist Dr Martin. From night 2 I have been 100% Rls free but my Gp is refusing to prescribe them as not on their formulary for Rls. Im now amongst a battle between Neurologist and Gp . Trying to find another Gp that will take me on and prescribe but no joy yet . I have 4 tabs left. I cannot believe I have found myself in this position . Life is so unfair . No one should have to go through this .

[Joolsg]

Many of us, like you, have found Buprenorphine to be miraculous at low dose.My RLS went from 38/40 on the IRLS scale to 0/40 overnight.

I had logically decided to end my life, because 5 years on 25mg Oxycontin and 150mg of pregabalin just didn't help. The top UK neurologist, Professor Ray Chaudhuri, told me there was NOTHING else he could do.

Shumbah reported that she had also decided to end her life, but her husband took her to New York. Buprenorphine was prescribed for her.

She posted that it had saved her life.

It also saved mine. My GP compassionately agreed to a 3 week trial.

It is totally unfair, illogical, cruel and unfair to deny this life saving drug to patients with severe, refractory RLS.

It SAVES lives.

I am appalled at the medical ignorance and refusal to help.

Buprenorphine is safe and highly effective. It does NOT lead to addiction or tolerance ( unlike dopamine agonists). Dr Winkelman's opioid register confirms this.

However. Even if we manage to get a trial of Buprenorphine, there are still many UK GPs that refuse to prescribe ANY opioids. Targinact has been trialled & licensed for RLS and it does help many RLS patients ( but not you or me). There are UK GPs who refuse to prescribe ANY opioids.

The lack of knowledge and understanding about the severity of the disease doesn't help.

Your next step is to ask your neurologist to issue a private prescription and find out where you can get it filled.

And then find a GP surgery nearby that will listen to your neurologist's recommendations.

I am SO angry on your behalf.

[Oscarcat63 in reply to Joolsg]

I am furious also, Joolsg.Fed up with the absolute paranoia about opioids !

I was at the hospital today and while waiting for results, I trolled through the coroner's reports in Tasmania, in particular looking for deaths associated with opioids (very morbid, I know). But about in about 99% of the cases, the deaths were in known opiate abusers who had been prescribed methadone or the equivalent from the alcohol and drug service. It seems that some were diverting their doses, almost ALL died from mixed drug toxicity - primarily injecting xanax along with their methadone dose to increase the 'high'., along with antidrepressants, alcohol and benzos

But I honestly could not find one report (unless a suicide of a cancer patient) of a death due to purely opioids.

But everyone is suffering because of it.

Arrgh.

[Joolsg in reply to Oscarcat63]

Yes. The opioid bias is causing suffering for those that need relief.How many suicides will have to happen before they listen to us??

[Oscarcat63 in reply to Joolsg]

Sadly I think it will be a fair few. I did find an article on google scholar stating that persons on stable doses of opioids were at high risk - even after 2 years of being tapered off.I have never really heard of a doctor being sued here, ( I am sure it has happened though).

The prescribing guidelines are VERY strict indeed.. in Tas, there is even a little leaflet given to them ' what to do if a patient asks for painkillers'... it's pretty discriminatory.

Then there is 'research' claiming that women feel more pain and people from low socio-economic situations also feel more pain.

I am both.

I could almost laugh, if I didn't want to cry !

[Huntingleroy in reply to Joolsg]

So....this week has been hell trying to get a prescription, hours on the phone and computer trying to find a gp who would prescribe Buprenorphine,trying to get my neurologist to read my emails (quite a few!)the thought of life without my tablets was unbearable and I was suddenly in a very dark place ,not eating etc. I took just half a tab 0.2 last night but legs kicked off at 5am. I have switched Gps after 50 yrs and they have said it shouldnt be a problem with consultants letter but still not done a prescription (staff off sick )Then today at 4.30 a phonecall from consultants sec " I have a prescrip for you in my hand and Im taking it to Reception for you to collect at hosp 8 miles away. I trundle over in rush hour and guess what , nothing there, ring her , leave msg , email her , replies out of office til Monday .I can tell you there was a red mist ! So I cant see this being sorted now as Im away for weekend. Anyway sorry for the rant , I needed it ! Hopefully next msg will be bursting with good news !!

[Claire_lc]

This is unbelievable! Heartbreaking and so unfair. I’m so sorry you’re having to go through this.

Could Dr Martin maybe suggest a pharmacy that’s willing to fill private scripts? He can’t just leave you in this horrible situation.

Having just posted about my own challenges (and ultimately success) getting hold of Buprenorphine, I’m doubly outraged on your behalf.

Keep fighting! Ring every practice in a 1-hour commute of your home. One of them just might be in a different (more understanding) NHS trust. There has to be a way round this.

[Huntingleroy in reply to Claire_lc]

Yes an abs nightmare. Tomorrow I will ring Dr Martins secretary again and ask what he can suggest . I dont need this stress right now

[Shumbah in reply to Claire_lc]

I would also ring all pharmacies , then ask who the prescribers are.

only certain pharmacies are allowed to stock Buprenorphine in Australia

[Huntingleroy in reply to Shumbah]

Thank you , will do

[Jumpey]

Dr.Jose Thomas who works in South Wales is a sleep specialist willing to prescribe buprenorphine. As well as working for the NHS he works privately from St.Joseph's Hospital near Newport.

[Huntingleroy in reply to Jumpey]

Thanks for that advice

[Drls]

oh my that is actually negligent because you will have withdrawal symptoms if you cannot access buprenorphine which is obviously an opiate - there must be another gp who will prescribe with a letter from the consultant - my gp did so very reluctantly once the letter had arrived.

If you are still trying to get the tablets and you have run out you could always ask to go onto the patch which is licensed for pain - with rls being painful - that way you would have some relief for rls and hopefully wouldn’t have withdrawal …..

good luck

[Huntingleroy in reply to Drls]

Thank you , I THINK I may have found a gp happy to prescribe with neurologists letter

[SueJohnson in reply to Huntingleroy]

That's great!

[Huntingleroy in reply to Drls]

I mentioned patches to the pharmacist at my surgery but a definate NO as they wouldnt know strengths to use etc etc etc ! I have spent all day either on the phone or emailing people that just dont understand my urgency of my problem .

[Marlayna67]

I am so sorry. If I were nearby I’d drop some of mine off to get you through!

[Huntingleroy in reply to Marlayna67]

So kind ,I may have found a gp happy to prescribe

[Claire_lc in reply to Marlayna67]

I was literally thinking the same thing. Fingers crossed you won’t need us!