end of my tether😩

[Bluejan]

hi team

Is it possible to wake up with augmentation symptoms and for them to last all day till my Ropinirole kicks in at night? I am utterly exhausted, can’t sit down for longer than a few minutes before I need to get up and move about. I had my 4th spinal fusion surgery in September and was convinced these nerve type pains were down to that but even tho surgery was successful they are still there driving me mad. I already take Pregabalin 150mg twice a day prescribed for nerve pain 12 months ago but am utterly confused as to which problems are due to my back and which are from the augmentation. I have an appointment with my GP on Wednesday and need some advice please , feel like I’m losing my mind! (Currently take 3mg Ropinirole at night)

[Joolsg]

Yes.It's why I joined this forum 8 years ago and was advised to get off Ropinirole. And the RLS moved to my hands, back and face.

Like you, I was on 4mg Ropinirole and augmentation was very severe.

I am now completely free of RLS. No symptoms night or day. I take 0.4mg Buprenorphine.

Here's the withdrawal schedule from RLS-UK website.

Show to your GP and ask for low dose opioids ( codeine, tramadol or oxycodone) to help get you through the brutal withdrawal.

And show your GP the iron therapy page as well.

rls-uk.org/useful-resources

[Bluejan in reply to Joolsg]

Thank you so much Jools, I already have a regular px for Co-Dydramol so maybe I’ll start taking the max daily dose and see if that helps

[Joolsg in reply to Bluejan]

It won't help until you're off Ropinirole.Sadly, until you get off dopamine agonists, adding other meds simply masks the increased RLS for a short time. The D1 dopamine receptors are up regulated and become hyper excited. That's what causes the daytime symptoms and the increased severity.

I was in denial for about 4 years. I would sleep all night once I took my Ropinirole. But I couldn't sit in car or watch TV.

Getting off Ropinirole stopped all that.

The co dydramol will help as you reduce.

Get normal release Ropinirole in 2mg and 4x 0.25mg doses. Explain to pharmacy that you need the smaller dose pills to start reducing Ropinirole.

Drop 0.25mg every 2 weeks. Symptoms will flare up at each reduction so take the co dyramol.

And read all the posts from the last few days. You'll see it's very, very common.

[Bluejan in reply to Joolsg]

Great advice, can’t thank you enough. I’m due to start back at work next week and dreading trying to do the job with little sleep and achy sore jumpy legs all day.

[Bluejan in reply to Joolsg]

Hi Joolsg, had my appointment with GP yesterday, she admitted to knowing nothing about RLS or Ropinirole augmentation so has advised me to wait until she gets some advice from a neurologist. I gave her the research stuff from the Mayo clinic and also the tapering schedule but won’t prescribe anything to help with withdrawal until she gets specialist advice. I also explained about iron levels and she has ordered a full iron studies series of bloods so at least it’s a start! I am currently looking after my mum who has Alzheimer’s as her long term partner who was also her full time carer died suddenly 2 weeks ago so am under a fair bit of stress at the moment and can’t decide whether to start reducing as per the schedule or wait till I hear back from the GP in the vain hope they will px Buprenorphine. I just want this awful drug out of my system but am dreading the withdrawal symptoms as I’m also due to start back at work next week. What would you advise? Starting now or waiting?

[Joolsg in reply to Bluejan]

Buprenorphine will not stop all the brutal withdrawals. It will help, but you will still experience several very bad days and nights.The usual advice is to take 2 to 3 weeks break from work and all social engagements. Withdrawal should really take place under supervision in a rehab clinic. It's worse than heroin withdrawal according to experts.

So you will need a plan for someone to take over your care duties for 2 to 3 weeks. And you should really have someone with you for at least the first 3 nights after you drop the last dose of 0.25mg.

There are videos on YouTube showing dopamine agonist withdrawal. I DID look at them so that I knew what to expect.

If you can get Buprenorphine- taper up slowly AS you reduce Ropinirole.

So when you drop 0.25mg Ropinirole. start 0.1mg Buprenorphine. Then stay on 0.4mg Buprenorphine until you drop the last dose of Ropinirole. Then you can increase to 0.6mg Buprenorphine and stay on 0.6mg until 2 to 3 weeks after your last dose of Ropinirole.

You don't want to take more Buprenorphine than will be needed long term to control RLS.

I know someone who took 0.8mg Buprenorphine WITH dopamine agonists. Of course it stopped ALL symptoms so they didn't continue to taper down off the DA. Then a few months later, augmentation broke through.

So whatever you do- keep reducing Ropinirole.

If I were you, I would wait until you know what the neurologist and GP say and until you have a care package in place for your mum and for you.

And explain to HR at work that you will need time off to get off a dangerous drug under supervision of doctor.

[Bluejan in reply to Joolsg]

Thank you so much, great advice and another part of the plan to show GP when I eventually hear back. You’re right of course, I need to get something in place for mum first, my head is all over the place at the minute 😩

[Joolsg in reply to Bluejan]

Totally understandable. And stress makes RLS worse.I do hope you manage to get a care package in place - for both of you.

[SueJohnson in reply to Bluejan]

I agree with Joolsg. That is so sad about your Mom losing her partner suddenly. Take care of yourself.

[Joolsg]

As you're in Merseyside, avoid the Walton Centre as they still prescribe dopamine agonists and will probably try to switch you from Ropinirole to another dopamine agonist. That will just prolong the agony.If you can see a specialist privately (as waiting lists are around a year) see Dr Chris Murphy at Salford hospital. He is familiar with augmentation and will prescribe iron infusions and low dose opioids if necessary.

[Doghorse]

Ropinirole is the problem, it actually causes RLS with augmentation and any of its family of drugs, you need to get off it but it's quite tough going through withdrawal symptons

[TheDoDahMan]

When all else fails, low-dose opioid therapy is indicated. We're talking buprenorphine for those in the UK. Low-dose (10mg/day) methadone, here in the US, has given me 8 hours of sleep for the last 6 years. Prior to that, I was considering ending my life.

[Merny5]

I feel for you Bluejan. I’m so sorry that you are suffering so much. I agree 100% with everyone who has responded to you. The withdrawal process is horrible. In addition, I am convinced that bone surgeries exacerbate RLS. You are a recent post op patient and that could be part of the problem. For me, I returned to baseline 5-8 weeks post op. Hang in there. It will get better.

[divasmom8]

YES!!! Orthopedic surgery’s most definitely exacerbate symptoms. In the past 5 years I have had shoulder reconstruction and spinal fusion. Both surgeries were supposed to be an overnight hospital stay and I ended up being in hospital for a week, both times, due to my severe RLS.

[Irmajs]

I augmented on Ropinrol and it was awful. Your symptoms exactly. I had RLS 24/7. I couldn’t sit for more than 5 min. At night it would start in my legs and move up my back and felt like it was crushing my chest. Also had in arms. I was only on 2 mg. My neurologist kept telling me that RLS always gets worse and he would increases my meds. I stopped going to him. When I started weaning off of Ropinrol my daytime symptoms started to stop. After a month of withdrawal symptoms my RLS returned to only being in the evening and at night just like when I was diagnosed. Good luck getting off and don’t let your Dr increase the dose as it will just make you worse.