Ropinirole

[Bloodhound669]

Today my doctor is taking me slowly off of Pramipexole and onto Ropinirole. Any other drug is habit forming so she will not prescribe anything else. I did, however, convince her to do a ferritin check of which I will have done December 11th, along with my low potassium. Is the switch to Ropinirole going to be good enough or should I see a neurologist?

[SueJohnson]

Don't go onto ropinirole as it is a dopamine agonist just like pramipexole and even if you do you would not need to wean off on to switch to the other. For example .5 pramipexole = 2 mg ropinirole.

As I remember you are a veteran and can't afford to go private so yes if you can see a neurologist do so and take the pertinent sections of the May Updated Algorithm on RLS at Https://mayoclinicproceedings.org/a...

Also take the AASM guidelines at jcsm.aasm.org/doi/pdf/10.56...

[Madlegs1]

Has she warned you of the inevitability of augmentation.

Why have you been switched from one bad drug to another.

She is pushing you into a deep dark pit of horror and despair.

Please do not follow her advice. Please ,please, please.

Read up most any of Sue Johnson's replies to many posts on this site.

She will come on anyway-- so I'll leave you in her capable hands.

Where abouts are you? We may have some good knowledge based doctors in the States depending on which state you are in.

Good luck.

[Joolsg]

Please, please don't! Ropinirole is another dopamine agonist. Is your doctor trying to kill you? Severe augmentation will quickly follow & you'll be walking the corridors to stop the horrible sensations. These drugs are now for 'end of life scenarios' under the American Academy of Sleep Medicine Guidance for very good reason.Please follow SueJohnson advice and get to see a neurologist asap.

[RLSAndy]

As the rest have said PLEASE dont let them think that Ropinirole will be anything but living hell for you, ive just spent best part of a year in hell getting off it and the things id do to the Dr who gave it me before i found this place. That drug might aswel be Heroin it’s pure evil, i pray you may the right decision for yourself 🙏🏻

[Birdland]

I hope you heed the advise given. Your doctor is unfortunately clueless. But that is not unusual. The only thing I have to add is, if you see a neurologist, try to see one that specializes in movement disorders. All dopamine agonists are hell to get off of, but to start another one will only make the inevitable withdrawal even worse. My GP now tells me that I know an infinite amount more about RLS than he does. RLS has not been taken seriously enough to warrant a sufficient amount of space in medical school curriculum.

[Premepoxol69]

100% agree with Sue; this was suggested by a specialist consultant to my husband who was gradually withdrawing from Pramipexole. He was initially prescribed Rotigotine, patches another dopamine agonist which were 100% ineffective, He didn’t sleep for several nights and then went onto Ropeinorole which again was a disaster, as he merely swopped one dopamine agonist for another, and he went through terrible withdrawal symptoms,. Again he didn’t sleep for 4 nights and we had to go back to the GP for an alternative medication. He is now on 10mg slow release bupenamorphine, which is helping with withdrawal symptoms but not 100% effective as he still has nights unable to sleep with restless legs . However better than dopamine agonist and helping with withdrawal Best of luck

[SaltyUK]

I agree with the comments made by others here and hope that you do not start taking Ropinirole . You will suffer augmentation at some point and withdrawal symptoms when you try to stop using it can be very difficult to deal with. I changed from Ropinirole to Gabapentin but did not know that you cannot simply stop taking Ropinirole. without reducing the amount taken slowly. (Neither did my GP!) I was almost suicidal for a few weeks until the Gabapentin started working so please try to find an alternative solution.

[Merny5]

I agree with the rest! Please do not take it. Find a neurologist!

[albax]

I have been on Ropinirole for about 4 years and seem to have plateaued at 3mg per day. Since starting to take ferrous fulminate and magnesium supplements about 2 months ago I can now reduce the dose to 2mg on some days.

Thanks to the Mayo Clinic Algorithm and the AASM guidelines which I presented to my GP I have a referral letter for a neurologist but I'm hanging on to it until I have given the supplements another 4 months to work fully. I am a veteran too (RM) and am reluctant to spend money on a private consultation until I'm sure that the supplements don't solve the problem.

[FlintHills]

To me, it is a question of quality of life. There seems to be no substitute for dopamine agonists.

I started on Carbodopa Levadopa about 40 years ago, Was switched to Pramipexole, which works fine for me.

I do have Tramadol for breakthrough symptoms, but seldom need it.

Sometimes it is good to hear the other side of the story.

[DesertOasis in reply to FlintHills]

You were young when you started on the Levodopa? Were you taking an antidepressant at that time? The real health care crisis are people who pre-disposed to RLS who start an SSRI in their 20s/30s, develop severe RLS symptoms, and are put on a DA…in their 30s! They may not have developed symptoms until their 50s or 60s. The DA then down-regulates their receptors. But it’s a strange tug of war. SSRIs supposedly up-regulate the D2 receptors while the DAs do just the opposite. Which drug wins…or is it draw?

I feel there’s something’s going on with you that has kept your DA effective for 40 years.