Question about quitting Ropinirole

[Micafe]

I'm worried. I've been taking Ropinirole for RLS for over a year now and, frankly, it hasn't done anything for me. As a matter of fact, the syndrome has gotten worse.

I've been doing research online and have found out that Ropinirole withdrawal symptoms are "similar to those reported by cocaine addicts — including anxiety, panic attacks, depression, sweating, nausea, generalized pain, fatigue, dizziness and drug cravings". This is something that my doctor never bothered to tell me.

I have also read that this medication makes the RLS worse over time and that's what I've been experiencing for the past few months. That's the reason why I am always trying other things which I have shared with you.

My question is, what withdrawal symptoms have those of you who have tried to quit this drug experienced? Were you successful? How did you do it?

I'm more than ready to taper off but my problem now is, I am not seeing my doctor because she is not working at the moment because she is going to have a baby.

Thank you so much for your replies!

[Hidden]

First to reassure you that although withdrawing from a dopamine agonist (like ropinirole) has been compared to withdrawing from such drugs as cocaine, the withdrawal effects are not the same as you describe. The comparison is probably made because it is difficult.

How difficult it is depends on what dose you're taking and how long you've been taking it for.

[Micafe in reply to Hidden]

Thank you Manerva..

I'm all confused now. Let's say the withdrawal effects are not the same as the ones from cocaine (I did think it sounded like an exaggeration). However, I have read here that they are very bad.

I have been taking Ropinirole for over a year. I can't remember the exact date .

I was diagnosed with RLS by my doctor when I explained to her what I was feeling. She immediately prescribed the Ropinirole. It seemed to work at the beginning, at least I was sleeping much better after a long period of having insomnia.

The insomnia was just that. No pain, no leg problems at the time, I just couldn't sleep. Then I started having problems with my legs.

The dose of Ropinirole I'm taking is 0.75MG. A whole 0.25MG pill plus half a 1MG pill (it could be more or less than that depending on the pill cutter).

[Hidden in reply to Micafe]

Now I'm not clear!

You seem to be saying that you had insomnia but nothing else and your Dr said it was RLS and prescribed ropinirole? If that's the case then it could have been primary insomnia or insomnia for some other reason.

Insomnia is not a defining characteristic of RLS, the urge to move is.

In any event, it does seem as if the ropinirole isn't helping and is just causing more problems.

You should perhaps just withdraw from it, like I wrote earlier. Just do it very gradually and slowly. Withdrawal effects will probably be just a worsening of RLS symptoms and sleeplessness. This will be at it's worst 24 - 48 hours after the last dose and should settle in a couple of weeks.

If you have 0.25mg tabs you can cut them in half and reduce in steps of 0.125mg

If it's correct that your original symptom was insomnia only, then, it's really up to you, but after stopping ropinirole you might want to try without taking anything. If you experience just insomnia and not the symptoms described in the diagnostic criteria, then it would seem.you don't have RLS.

[Micafe in reply to Hidden]

Nooo Manerva!!... You got me wrong! I did have symptoms of RLS and I explained them to the doctor.

Let me tell you something first... English is not my native language and sometimes I may say things in a way that people get confused.

What I told my doctor -and these were more or less my words- was "I'm having this very strange feeling in my legs, I have to move them, I feel like bugs walking on them and sometimes they kind of jump". I did not say anything to her about my insomnia. Doctors here are very reluctant to prescribe medications for insomnia.

I mentioned the insomnia here... just here.. because it's a fact that when I started taking the Ropinirole, my insomnia disappeared. I have no idea why but it did!!! I had it long before my legs started having problems.

By the way, it seems it's coming back but there are reasons for it. Too many problems, too many things to think about.

[Hidden in reply to Micafe]

Thanks, that makes it clearer.

RLS does cause insomnia. This, for some reason, isn't in the diagnostic criteria, but it is a feature of RLS. Usually it's becasue symptoms prevent falling asleep, but also it can cause early waking or both.

Anything which treats RLS then, will improve sleeping.

If whatever you take for RLS starts to fail, then insomnia will get worse along with the RLS symptoms.

One of the complications of dopamine agonists, such as ropinirole, is that they start to fail. This usually takes years, but can happen in months.

You are on a relatively low dose of ropinirole and your doctor may advise increasing the dose. This may work for a while, but ultimately it will fail again and also increases the dose will increase the risk of another complication, that is augmentation.

So it's probably not a good idea to do that, I'd still suggest reducing the ropinirole.

As you do appear to have RLS then I suggest NOT taking a sedating antihistamine as I earlier suggested. You may also need an alternative medication for your RLS. I'd suggest pregabalin. You'd have to get a prescription for this and I suggest you start this before reducing the ropinirole.

Also, if you've not previously realised, iron therapy can be a treatment for RLS and in fact should be considered before medication.

Here's some more information

sciencedirect.com/science/a...

[LotteM]

+ on Manerva.

Additionally, I would like to play the Devil's advocate and aak you whether you are sure you have RLS? In the recent past, a very short course of dopamine agonists like ropinirole was used as an additional deterministic feature to assess to diagnose RLS. Now diagnostics mainly centre on the urge to move, but still. And in your earlier posts you do mention neuropathy. Just asking. No criticism.

[Micafe in reply to LotteM]

Hi LotteM

I cannot tell you I am completely sure I have RLS. All I can tell you is that I have all the symptoms people describe here and on websites I have visited and I was actually diagnosed by a doctor. Not a specialist, though.

Yes, as a matter of fact, I do suffer from Peripheral Neuropathy caused by chemotherapy. I had breast cancer several years ago and I survived. Sometimes I wish I hadn't. (Sorry about that, just being honest).

I haven't decided which is worse between RLS, PN, or Fibromyalgia. According to different doctors, I suffer from them all and they compete among them to make my life miserable.

Do you think that my leg problem is because of the PN and not RLS? Is that the reason why you mentioned it?

I do have all the known problems that PN causes and, based on what I have read and heard, they are not the same as those of RLS. I'm not sure if they are related, though, and I actually blame chemotherapy for all my problems, including the fibro.

[Hidden in reply to Micafe]

RLS can be "secondary" to PN, rather than it being "primary" RLS. ( also called idiopathic).

With seondary RLS, it's better to treat the underlying condition, if that's possible rather than trying to just control the symptoms.

You may be better off taking pregabalin, than ropinirole.

[Micafe in reply to Hidden]

Thank you

[Hidden]

Furthermore, since ropinirole isn't "psychoactive" i.e. doesn't give you a "high" then you shouldn't get cravings.

Two things stand out in your case.

One is how to go about withdrawing - which can be done with ways of dealing with withdrawal effects.

Two is that you say that ropinirole has never really worked for you.

Looking at withdrawal. I am assuming that you haven't developed an Impulse Control Disorder (ICD) as a result of taking the dopamine agonist (DA). If you had you would find yourself compelled to repeat doing some things like gambling, shopping or overeating,

NOT having an ICD reduces the severity of withdrawal effects. In which case withdrawals will be mainly a temporary worsening of symptoms and sleeplessness. This makes it difficult because if symptoms are already bad, then them getting worse, even for a whil can be a problem.

However, anybody suffering augmentation due to a DA will find that the symptoms of augmentation subside.

There are things that can be done to reduce withdrawals.

The main thing is to reduce the dose of the DA in small steps over relatively long periods of time. In the case of ropinirole this may mean reducing the dose in steps of 0.25mg about every 4 weeks, certainly no less than two weeks. The slower the better.

I will write more later.

[Micafe in reply to Hidden]

Thank you so much, Manerva, as usual, you've been very helpful. I'll reply to both your last two messages here.

No, I do not have ICD. So I think that's good news.

Since I cannot get in touch with my doctor now because, as I said before, she's having a baby and she's not working, I think I'll do it by myself, with my husband's help. He's the one who has to deal with all my problems... 😪

I'll follow your advice Manerva. I'll do the diagnostic criteria stuff and if necessary, the histamine challenge. I will also start quitting the med as soon as possible. I got it: 0.25mg every 4 weeks. Sounds good to me. Wish me luck. 👧

You have no idea how grateful I am. You told me you're not a doctor but you're certainly more informed than many of them.

Thank you, thank you. I wish you the best.

[Hidden]

AS regards Two

As Lotte also says, dopamine agonists have a very good reputation for being effective for RLS almost immediately. They don't work for everyone, but when somebody says, it doesn't work. It does make me wonder if you really do have RLS.

One way you can assess whether you have RLS is to compare your symptoms to the RLS diagnostic criteria. If your symptoms match ALL 5 criteria then it's probable you have RLS, if they don't match all, then you probably don't have RLS.

Here's a link to the criteria.

irlssg.org/diagnostic-criteria

Another possible do-it-yourself test for RLS I've discovered recently is the "histamine challenge". For this you take a single dose of a sedating anthistamine. This could be a cough medicine or an over the counter sleep aid, ask your pharmacist

Be prepared! If this makes your "RLS" symptoms worse, then you probably have RLS. However NOTE - if it doesn't make symptoms worse, it doesn't mean you don't have RLS.

If it seems that you don't have RLS, then you will need to consult your doctor and you will still need to withdraw very slowly from ropinirole.