Mirapexin Oxycodone

[keiralee]

Hi, I have just had an appointment with a neurologist at UCL neurological hospital in London Queens Sq. I need to come off Mirapexin for the second time and ha ve been managing the withdrawals myself with the help of TramadolI had set such store to this appointment but came away so disappointed. The Dr wanted me to double my 0.26 Mirapexin to 0.52 because I may not be augmenting it could be that my RLS is worsening !!

I requested Buprenorphine but they said only a sleep consultant can prescribe that. They have suggested Oxycodone and will write to my gp to confirm this. So another few weeks goes by whilst they write the letter and my gp decides to action it. Apparently they can't write a prescription for this at the hospital.

I was so looking forward to this appointment after weeks of discomfort and no sleep.

This is a neurological hospital !! What hope have we got.

[Claire_lc]

I thought Queen Square WERE sleep consultants!

Why do doctors feel that Oxycodone is better/safer than Buprenorphine? I felt like I’d taken poison on Targinact (which is Oxycodone plus Naloxone), but had very manageable nausea for just a few days with Buprenorphine.

Jools mentioned that Queen Square have become reluctant to prescribe Buprenorphine because some patients have developed dental issues. There’s plenty of information online explaining how to minimise this risk, but personally I’d take any amount of tooth decay for the relief that this drug provides.

Can you check whether Buprenorphine is red-listed in your local NHS drug formulary (Google those words for your area). If it isn’t, then you could (if you can afford to) see one of the few private doctors who understand its use and will advise your GP to take over prescribing. I had success with Dr Robin Fackrell at the Sulis Hospital in Bath, but then had to move to a GP practice an hour away from where I live because my NHS trust has red-listed it here.

It’s a total postcode lottery, but you can play it and win if you’re lucky enough to find an out-of-area practice that will take you on. (Tell them you work in their catchment area.)

[Madlegs1]

I've been on Oxycontin and Oxynorm for the last 8 years without any long term issues.

The first couple of weeks were "interesting". Itching and insomnia, but after that I was ok.

I'm one of those who cycle meds quickly, so I had to supplement the Oxycontin with 5mg of oxynorm.

Until you try any of these meds, you won't know how you react.

Good luck.

[Joolsg]

I am so stunned that neurologists are STILL advising increasing mirapex.No, just no.

My RLS is now zero.

It became really, really bad in 2016 because of Ropinirole. Not because my RLS was worsening!@

So how can it now be zero eight years later if my RLS was worsening??

Neurologists are, quite frankly, idiots and they know sweet FA about Dopamine agonists.

I do hope you totally ignore him, send a complaint, tell him Prof. Walker at UCL prescribes Buprenorphine for RLS and ask him to reconsider.

[Drls]

Hello, I see Prof Walker at Queens Square and he prescribed me buprenorphine …..( after pregabalin, the rigitone patch and oxycodone, so nothing else had worked and that’s probably why he agreed to prescribe…) in effect it doesn’t work particularly well for me - however I do realise that for many it is transformative.

Oxycodone is licensed for RLS so neurologists and gps are more likely to prescribe it…. And it might work for you so it’s worth a try.

I agree with everyone else that a higher dose of a dopamine agonist is not the answer and I’m amazed that a neurologist would suggest that - they must be extremely misinformed.

I really do wish you good luck with everything - I agree that all the waiting about doesn’t help us - we are suffering daily and the effect on our day to day lives is horrific - let us know if the oxycodone works or helps x

[keiralee in reply to Drls]

Hi Dris, have you by any chance got Prof Walker's direct email or secretary s address at Queens Sq. I am under Prof Bhatia but only usually see his registrars as I did on Friday. I'm going to wait until I get my summary of last Thursdays appointment and then try contacting him.Thank you so much for your helpful comments.

[Drls in reply to keiralee]

Hi keiralee I’ll message you directly with the email - she often doesn’t reply but I think the emails do go to Professor Walker …..so it’s worth a try x

[bumblebee_tuna]

Oxycodone works okay for me, it’s not perfect but I get okay sleep with it and no bad side effects at low dose.

[Walras]

Hi - I have been on 5-10mg oxycodone for over 5 years. I participate in the study on the long term use of opioids for RLS in the US. I was on mirapex as well for 10 years with severe augmentation and it took four attempts at coming off on my own. IT was a horrible experience as many will attest to. I finally was able to get hydrocodone to help me through the withdrawal and then found that oxycodone worked better for me. It is not perfect. It can cause alerting, i.e. insomnia/anxiety, and also for some may have an adverse affect on osteoporosis which I also have. Because of the short half-life I have to take the second 5 mg in the middle of the night. I am thankful that it does resolve the RLS after about an hour in the middle of the night and the first dose has to be taken before the evening symptoms "kick" in. Please take care and I hope you find some relief.