Dopamine Agonist (Ropinerole) Withdrawal

[Chocolate123Lab]

Hello RLS Community,

Just wanted to report on my experience coming off Ropinerole. I'm following the guidelines and am reducing by .25 mg every 2 weeks. I was at 2 mg nightly, and am now on 1.5 with 15 grams of Codeine to help me through the process. The codeine seems to be effective in terms of keeping my RLS in check, for which I am very grateful.

What I wasn't counting on is the depression associated with this process. I assume this is coming as a result of reducing Ropinerole as opposed to adding Codeine. I feel very down, totally unmotivated, and quite uncomfortable in my body (joint and muscle aches). I have completely lost my ability to experience joy and pleasure and just feel like I'm "going to through the motions" instead of really engaging. I am also finding it very difficult to concentrate and getting out of bed seems pointless.

I might assume that these symptoms are not unique to me? If that is in fact the case, I am wondering how others have coped with the "mental health" aspect of reducing Ropinerole? Is it something that evens out, or is it something that I should expect to worsen as I continue to reduce over the next 2 months?

Thoughts and experiences much appreciated

Jane

[SueJohnson]

Yes depression is common and will lift after you are off ropinirole although probably not immediately. You can ask for wellbutrin or trazodone to help your depression. Do not take any other anti-depression medicines as they will make your RLS worse.

[Chocolate123Lab in reply to SueJohnson]

Thank you Sue. I was hoping not to have to see a private neurologist to get the wellbutrin due the expense of all of this and concerns about adding yet another drug into the mix (I have to be careful of my liver) but it seems like perhaps it's the best path.

It's good to know it will pass, but also concerning as regards the next 2-3 months... I just don't feel good - and despite having many years without it, my brain seems to be prone to depression anyway.

I'm also succumbing to impulse control disorder (shopping - a means of searching for more dopamine I guess?) which is not very me so money is flying out the door. Probs best to reduce limits on the old credit card. Gosh - this drug is so weird!

[SueJohnson in reply to Chocolate123Lab]

Impulse control disorder can be rough. Yes reduce the limits on your credit cards and if you are married give them all to your husband and let him do the shopping. I feel for you but you will get through it and we are all here for you.

Wellbutrin can be hard to get in the UK. Trazodone should be easier.

[Chocolate123Lab in reply to SueJohnson]

Thank you so much Sue. You being here for me/us means so much. It really does.

[Joolsg in reply to Chocolate123Lab]

If your GP did NOT expressly warn you about the VERY high rates of Impulse Control Disorder- you have 3 years to sue for negligence. There is a post on here about this by Switalskis. Look up Switalskis and you can see the details.

The other legal firm that has successfully sued hundreds of UK doctors for failure to warn about ICD is Leigh Day.

If you scroll through my posts- you'll see a post about Adrian Wilson who gambled away over £100,000.

I encourage everyone to do this as it is the ONLY way we will stop the UK medical Profession prescribing these dangerous drugs.

ICD and loss of pleasure when withdrawing are also common. Your brain has been flooded with the feel good/ pleasure hormone and now you're reducing it. It can take months for your dopamine receptors to recover. So try to do something every day that gives you pleasure. Once off Ropinirole, your brain will start to repair.

Also report augmentation and Impulse Control Disorder and loss of pleasure via the Yellow Card Scheme.

Doctors keep telling patients that these common complications are rare.

bnf.nice.org.uk/medicines-g....

[Chocolate123Lab in reply to Joolsg]

Hello Joolsg, thanks so much for that. I have heard of Adrian Wilson, and his case is tragic. I was, as far as I recall, never warned about ICD. The first I heard of it was here, and then my private Neurologist mentioned it. For me it expresses as over spending and over eating (sugar/carbs). It has not been an issue up until recently, but I noticed it getting out of hand around the Black Friday sales. I have reported augmentation via the Yellow Card Scheme and will go back to report about depression/loss of pleasure. Thank you for the reference to Switalskis and Leigh Day. I shall have a look. As always, many many thanks!Jane

[Claire_1c]

Hi Jane, I really hear you re. the depression. I’d never really experienced it until the later stages of augmentation, and then much worse in the year after coming off Ropinirole and starting Burprenorphine. Everything was an effort, and very little gave me pleasure.

I took my last Ropinirole in late 2023, and finally got Buprenorphine in May this year. I realised quite recently (maybe within the last 4-6 weeks) that I was no longer feeling depressed as my baseline state. More and more often now I’m aware of feeling lighter and less blue. So that’s about a year in total, which I know isn’t the most encouraging thing I could say, but at least things I can confirm that it does eventually get better.

During the depressive period I had a good reaction to Vortioxetine (20mg daily) - no side effects or RLS triggers. But I can’t say it completely eradicated the low mood. I think Jools’ advice to do something nice for yourself each day, and be gentle with yourself while your body readjusts is maybe the best you can do.

I also suffered from ICD in the form of out-of-control spending, which I can honestly say stopped when I was no longer taking Ropinirole. I find it much easier to be self-disciplined now, but back then, I was just like you. My credit card was used and definitely abused!

It’s so utterly miserable on both a physical and mental level to come off dopamine agonists, and then to adjust to life without them. I think we all wish we’d never been given them in the first place.

In the meantime, keep using this forum to offload your concerns and ask for support - as many times as you need to. No one will judge you. Everyone understands and is cheering you on. You’ve done amazingly well to reduce to 1.5mg. No one else can comprehend the courage and determination required. What you’re going through is part of the unavoidable process. But believe me when I say it will be over one day.

Stay strong Jane! 👊

[SaltyUK]

I also suffered from quite significant depression when I came off Ropinirole despite never having previously had any mental health issues. I just tried to find things to do that I enjoy such as walks with my wife and exercise in general that made me feel a little better. I didn’t get ICD and I do think that your symptoms will improve if you can find something to do that you enjoy. Hold on to the thought that this is temporary and that you will get through it.

I wasn’t given any warnings by my GP who swapped me straight from Ropinirole to Gabapentin when I told him that I thought that I was suffering from augmentation. I only became aware of augmentation and withdrawal symptoms through this forum.

[ucdailoi-no-1]

Im so sorry to hear of your plight. What a terrible pickle we find ourselves in through no fault of our own. Good medical help is very hard to get.

Hang in there, so many people wishing you well and hoping you get through this time unscathed..