At my wits end.

[Marley7]

I'm currently coming off ropinerole due to augmentation. I think my doctor advised me incorrectly and told me to reduce my dose by 0.25 each week. I now think that was too quick. My symptoms are off the chart. I stopped at 0.5 for a couple of weeks hoping it would settle down a bit and my doctor prescribed 50mg of pregabalin to take each night. It didn't help. I've just reduced down to my last 0.25. I've tried to get another appointment as I am not coping at all but can't see anyone until Wednesday (a wait of 9 days). I don't know what else to do so I've just increased my dose of pregabalin to 100mg which gave some relief on the first night (I slept from 10pm until 2am before waking with symptoms- the most sleep I've had for well over a month) but have barely slept since. Does anyone know how much longer the withdrawal from ropinerole will take?

[SueJohnson]

Did your symptoms settle when you were on .5 - not go away but settle down. If so you might want to go back up to .5 wait for your symptoms to settle and then reduce by half of a .25 tablet or if that is still too much to reduce, you can get an inexpensive jewelry scale on Amazon ($11 in the US) that measures down to .01 gram and shave off a bit of the tablet and measure it. Then reduce by that amount every 2 weeks, waiting for the increased symptoms to settle before reducing further.

Or you could go back up to .5 mg until you see your doctor and ask for a low dose opioid. Show him/her the Mayo Updated Algorithm on RLS section on opioids, Tell him you only need it temporarily to get through coming off the ropinirole. Ask for methadone or buprenorphine. as they are long lasting and most of the others only last 4 to 6 hours and you need to take them that often or you will have mini withdrawals. If s/he prescribes on of those be sure he prescribes enough that you can take them that often.

Meanwhile you can get cocodamol OTC which contains a small amount of codeine.

Hang in there. You will make it.

[Joolsg]

rls-uk.org/useful-resources

Scroll down to dopamine agonist withdrawal, print and show your GP.

Withdrawal is hell. No sleep for 4 to 5 days after last dose of Ropinirole and 24/7 severe, violent RLS.

Patients and GPs do not realise how bad it is.

Make sure you have a friend of family member with you for the 4 nights after you stop Ropinirole. Falls from exhaustion are common. You can't stay still, you have to move, but you haven't rested or slept for days.

You genuinely think you won't make it, but IT DOES get better and you realise the damage Ropinirole has been doing to your brain.

Do ask for an opioid to settle the withdrawals. Pregabalin doesn't work until about 3 weeks after you stop Ropinirole. Explain that it will be temporary, to get you through the most difficult stage of withdrawal.

Stay strong, you will make it and the severe RLS will settle. The 100mg pregabalin will take 3 weeks to become fully effective and it will start to cover symptoms. You can then start to increase from 100mg to 150mg or higher.

Take a video to show your GP. Hopefully they will realise how tough withdrawal really is.

[davchar23]

Dear Marley7,

I apologise for a bleated reply as just returned from holiday.

I must first of all agree with the reply made by Joolsg and then explain my experience with with DA withdrawal from augmentation. I cannot honestly say that pregabalin, which I eventually took up to 600mg'day, did any significant relief.

It is now over 9 months since i came off DAs (rotigotine patches) and the only significant relief i have had has been through buprenorphine (04mg/day).I suspect that the DAs have damaged my receptors and that they will never go back to a situation whereby RLS will not be a problem.

Sorry i cannot be more helpful or more supportive but my experience with both pregabalin & gabapentin is that they didn't help me and i am now free of them except for occasionally a small dose (26mg/day pregabalin) to help with opioid anxiety.

Regards

Davchar23