Going off of ropinerole

[Daffo55]

I’m on day 3 of getting off of ropinerole cold turkey after 25 years. No sleep yet. Anyone else done this? My doctor asked me to do as I had severe augmentation. Any tips?

[Hidden]

Yes, go back and tell your doctor no one should go cold turkey when taking ropinerole and you poor thing are augmenting on it too. You need to be weaned down off ropinerole slowly, and need a pain med like tramadol to help with the withdrawals you are having. Lots of posts on here of people having to wean off ropinerole or mirapex both need to be dealt with in the same way, and you need to put in place what med you will be taking instead of the ropinerole. Put in the search box top right hand side of the page augmentation and RLS, you will get many posts on the subject and what people do to wean off their ropinerole or mirapex.

[Joolsg]

Obviously a doctor who follows Dr Early in the USA. Going cold turkey is barbaric & I agree with Elisse.

What meds does your Doc intend to prescribe once off Ropinirole?

Withdrawal is hellish and you really need tramadol or OxyContin to help you through it and zolpidem to allow 1 or 2 hours precious sleep.

[involuntarydancer]

It does somewhat depend on what dose of ropinerole you were on. There is a school of thought that says coming off a dopamine agonist, particularly after augmentation, is going to be misery whether you titrate slowly or just go cold turkey and titrating slowly only prolongs the agony (as Julesg indicates Dr. Early in John’s Hopkins university). However, stopping suddenly carries a risk of ‘daws’ (dopamine agonist withdrawal syndrome) particularly if the dose is high.

Given that you have now been three days off ropinerole, depending on what your dose was before you stopped maybe you’d be better just continuing now. The worst symptoms usually last about 10 to 14 days.

As the others have said, the only thing that really helps during the a acute phase is a strong opioid such as tramadol or OxyContin. Apart from that have something mindless to do during the night such as reorganizing the storage boxes or ironing or something. And be careful not to fall asleep while standing up as you can hurt your head. I used to do a series of yoga stretches which were soothing and sometimes provided relief for a little while.

I really feel for you. It is an awful, awful process. It is so worth it though. It is great to be finished that drug and have control back. Good luck.

[Parminter]

There are divided opinions on coming off dopamine agonists.

The cold turkey one always usually includes methadone or other strong opioids to assist with the ten days (plus, minus) of misery. Tramadol may not do it. Methadone is the drug of choice as it acts in a slightly different way.

Your doctor may not want to replace your med immediately, or piggy-back, because they wish to know your baseline without DAs.

I have methadone to help me with breakthroughs (I have to come off soon, but am not brave enough!), and it is a brilliant drug for RLS.

For the rest, if you have managed three days, it will start to get a little better soon. The second three days you should get a bit of sleep, not much. Slowly it will improve. It should take ten days on average, and it will be diabolical.

But you have broken the back of the thing already, brave you. I would not waste those three days. It will be hell any way you attack it.

Do stretches, hot/cold treatments, baths, distractions, anything to comfort yourself.

Good luck. Seven days to go.

Here is the definitive paper on opioids.

mayoclinicproceedings.org/a...

[Hidden]

I know what my preference would be IF i had to come off a DA, and that is weaning off. There is no way i would or could go cold turkey.

[Daffo55]

Thanks- first time seeing this site yesterday and then writing on it. Wish that I’d found it(or looked) -I’ve had RLS for 25 years.

Made it through another night- got 30 minutes of sleep. I’m so worn out.

I am in nothing right now. I was taking 1mg if R at 5:00 pm and a dose of 1mg at 8:00 pm. It really was not working. After a week, I’m supposed to start on Gabapentin.

My dr is not a fan of Dr. Early, and claims to have success with her patients.

Side effects have been: heart racing, nausea, low fever, cramping feet, and extreme leg pain.

Thank you again!

[involuntarydancer in reply to Daffo55]

Hi Daffo,

Your doctor may not be a fan of Dr. Earley but she seems to be using similar methods to his. As I understand his system, he takes his patients off the dopamine agonist fairly rapidly (ie without much of a titrating down) and without the assistance of other treatments (in particular he does not favour using an opioid to lessen the torture of withdrawal from a dopamine agonist). He then leaves them a few days with no other treatment to ensure that the drug is completely washed out of their system before starting a new regime, often involving either an anti-convulsant such as gabapentin or an opioid. This seems to be similar to your doctor. I have to qualify the above by saying that I don't know Dr. Earley, nor have I been treated by him. I am only relaying my understanding based on posts by patients of his and what he posts himself in his video posts on the Johns Hopkins website.

Coming off a dopamine agonist is pure torture, whether you titrate down or go cold turkey. The only alleviating treatment is an opioid. Otherwise it really is a question of making it through minute by minute, hour by hour. You have all our respect. Anyone who has been through it will say it is one of the hardest things you can do. Well done for getting so far.

[Duckish in reply to involuntarydancer]

Absolutely, well done! I have done it and serviced to tell this story! It’s like, what I imagine, coming off of haroin! Bad, bad stuff!!

[LotteM]

Daffo, have you had your ferritin checked? For people with RLS it should not just be ‘normal’ but at least close to 100. Please search the site for info on iron and ferritin. Also, Johns Hopkins website hopkinsmedicine.org/neurolo...

Sorry, too tired to write more. Good luck, I hope your legs behave better really soon!

[involuntarydancer in reply to LotteM]

Oh yes; Lotte is correct. Raising iron levels can be extremely helpful. You should definitely get your levels checked.

[Daffo55]

Lab work being done on Friday to check ferritin.

Thanks for all the helpful responses...

[Daffo55]

I’m off if it! Week was absolutely horrible but I feel great! No meds at all and legs don’t hurt much. When I was on the ropinerole, there was no life quality. Driving, working, sitting at any point was out of the question. Legs are still saying hello but it’s not so bad. I’m supposed to start Gabapentin now. I wish a dr had told me to get off ropinerole years ago. Don’t ever do without a doctor, though, because everyone reacts differently, but I do know ropinerole is bad bad stuff....

[Parminter in reply to Daffo55]

Bravo! You did it!

[involuntarydancer]

Wayhay!!!! Go you! That is fantastic. Well done. So much kudos - it is so hard. Even though I have found it a struggle to get a good system of cover for my leg symptoms I have no regrets about discontinuing my dopamine agonist in spite of the misery/torture of the withdrawal process.