Withdrawal from Ropinerole

[ruff1]

Any one experience withdrawn from Ropinerole? My husband is gradually withdrawing due to hallucinations/ delusions, he’s come down from 22mg to 12mg over the last month . Day time hallucinations have gone but still has voices in his head during the night . Worried if he reduces Ropinerole any more it will have impact on his mobility. His mobility has decreased since he started the withdrawal but he compensates with the Apo go pen . Any help appreciated

[park_bear]

Levodopa medication is the mainstay of Parkinson's treatment. That would be the logical choice to make up for the decrease in ropinirole.

[ruff1 in reply to park_bear]

Hi thanks for your reply he’s on Stelevo 6 x 125mg a day , 10mg Zadago and has the Apo go pen if he freezes, been diagnosed 15 years , PD nurse not keen to increase stelevo ☹️

[GymBag in reply to ruff1]

It is very important that any reduction or termination of the use of any PD medication be done in very small steps over a long period of time and be under the supervision of a doctor. One of the results of not doing this is death. Read the medication pamphlet for warnings.

[Niggs]

In my experience 18mg requip xl to 10mg, the main effect was worsening pd, no surprise! But it was an effect of falling drug levels rather than revealing worse pd. I was told 2 - 4 weeks to settle, bollocks! (forgive the expletive) 8 weeks minimum, in my case 10 weeks, after which things settled. (16mg made me turn my bedroom into a doctor's consulting room, luckily I was hospitalised when I started bidding on ebay for an ambulance)

[Hidden]

I had the same problem with Ropinirole when I hit 16mg /day for an extended period (effects for me seemed to also be cumulative over time), so I quit it cold turkey last Fall (my neuro supported after I had already quit - when I saw him next). Since then, I have let Ambroxol (17 months now, 900mg/day presently), and a variety of supplements to leverage it, do the heavy lifting for me with regard to movement support as well as its cognitive benefit, like almost no freezing anymore (& for me I believe slowing my progression).

I also take two to three 25-100 C/L tabs daily (1/2 of what I'm prescribed), and two 100mg Amantadine (plus an occasoinal Rasagaline for whatever good it does long term). 5 years since diagnosis. Quitting Ropinirole did have a negative impact on my movement short term, but that was the only thing that would stop the problem in its tracks (& save my marriage), Since then the therapy just discussed, plus continuing daily exercise, has been effective for me in managing my PD and keeping my movement pretty normal and my arms swinging.

[ruff1 in reply to Hidden]

Thankyou for your reply what does Ambroxol do to help you I’ve never heard of it ?

[Hidden]

You're definitely not alone in never having heard of it (it's an off patent pretty safe cough med, so there really has been little interest by big pharma in researching it for PD), I hadn't either until early last year when the 1st (university & hospital) trial results were published. Recommend you take a look at those results, as well as the current trial of Ambroxol for PD dementia, and some recent research aggregating the results of many with PD who have tried it for some years (3 links below). If after that you want to know more about what I believe it's doing for me, I can share that too, just let me know. PS, my neuro knows and he's fine with it.

jamanetwork.com/journals/ja...

bmcneurol.biomedcentral.com...

onlinelibrary.wiley.com/doi...

[Hikoi]

Ruff I feel for your husband. I reduced my agonist and ended up with movement problems. You should not need to discontinue altogether (many people can’t, they get agonist withdrawal syndrome ) . Hallucinations may be due to the agonists alone but they may also be due to the combined effect of all the dopamenergic meds he is on. I would be taking things so slow as gym bag says.

[robinseve]

I was on Ropinerole before I got my DBS. It would cause me to act extremely manic. Plus it caused me to develop an addiction. I was not the same person at all. After the DBS Surgery Ropinerole was the first thing that I got off. But I really started to decline in my mental health. I was very active physically before the DBS and was a fighter. But I felt so weak after the operation, both physically, which I could overcome but in my mind. I really started to decline. The doctors at the Univ of Md and the psychiatrist got together and determined that I must have dopamine agonist withdraw syndrome (DAWS) so they added a small dose back to my meds -- .50 mg in the morning and .25 at night. However, I'm still struggling mentally. I feel like I'm being tormented. I wish I had never taken that medication. I believe it is a cause for most of my mental health problems. By the way the DBS operation totally cured me of very severe dyskinesia. I should be happy right? But I still go off and do rash things in a frenzy that destroy my life.