Ropinirole Side Effect?

[crl363]

Has anyone had their medication actually set off the RLS symptoms? For example, I take my dose ropinirole and within 15 minutes my legs starts acting up. Around 1hr later it subsides and I’m good until the next dose or until my legs act up again. This doesn’t happen all the time but even once is too often.

[ViewsAskew]

Has anyone had their medication actually set off the RLS symptoms? For example, I take my dose ropinirole and within 15 minutes my legs starts acting up. Around 1hr later it subsides and I’m good until the next dose or until my legs act up again. This doesn’t happen all the time but even once is too often.

None of us want more symptoms!

It takes an hour for ropinerole to get into your system and to work. I'd guess it very unlikely that the medication is setting off your symptoms, and more likely that your symptoms are starting earlier than the did before. When the symptoms stop an hour later, it's because the medication is finally working.

How long have you been taking it?

[Chipmunk]

I've had a med set off my symptoms, but they didn't resolve until the dose had worn off (about 6 hours). Keep track when this happens of the time you took the dose, the time the symptoms started and when they resolved. WED/RLS often follows your circadian rhythm, with symptoms usually starting or worsening in the evening and resolving or lessening in the early mornings. My symptoms go from about 8 p.m. to 7 a.m. If I take my nightly dose of meds at 7 p.m., I'm fine, but if I wait until 9:00 or 10:00, it seems like my symptoms worsen after I take my dose. In actuality it's that the WED is ramping up at that time and the meds haven't kicked in enough to combat it.

[crl363]

I have been on Ropinirole for 10 years (10mg/day) now. I take 4mg ~5:00pm each day. 2mg ~9:00pm. 4mg ~11:00pm before bed. I have RLS symptoms most days but usually can fight off taking an earlier dose. Sometimes I don’t show any symptoms during the day but take my meds at the usual 5:00pm. That’s when I’ll develop my symptoms within 15 minutes of taking the dose.

[Polar Bear]

10 mg is a very high dose of ropinerole. It might even be in the realms of dosage for Parkinsons Disease.
I think that Dr B mentioned at a time that anything over 4mg daily was excessive, if symptoms were not controlled by 4mg in 24/7 then the ropinerole was not working.
And at present there is talk now that 4mg is too much. (I am on 4mg over 24/7)

What dosage did you start at, and how long have you been on 10mg.
Have you had your ferritin serum levels checked, please do so, they should be at least 100 if you are taking ropinerole.

[ViewsAskew]

I'm with Polar Bear - I think it's highly likely that you've augmented on the drug and have likely increased your dosages over time. Do you remember what dose you started on all those years ago?

Please consider sending an email to Dr Buchfuhrer about your doses and see what he suggests. His email is somno@verizon.net. The website where he posts his answer to patient letters is rlshelp.org.

[crl363]

Thank you for the advice. I had email Dr Buchfuhrer about my current condition and he did agree with you that my dose was much too high. I haven’t had a neurologist but have finally set up an appointment with one on the 15th of this month. I started with a ropinirole starter kit 0.25mg,0.5mg, 0.75mg, and 1.0mg tablets. I have self medicated over the years as my symptoms have gotten worse. I have been looking at other post as how to get off of this. Based on some of them it sounds like I shouldn’t be having daily symptoms like I am. I have been dealing with this way for so long I thought it was normal. Maybe that has something to do with the meds setting off my symptoms.

[ViewsAskew]

I think that is how it happens - over time and we don't realize how crazy it's getting. Then we realize that we're taking WAY too much and that our symptoms are out of control.

It's not going to be easy to stop, but you really need to do it to get your life back. Glad Dr B wrote back.

[badnights]

In the links below my signature, you'll find some information to take to your doctor about augmentation (which is when ropinirole or pramipexole make the RLS/WED worse over time). Getting off the ropinirole is probably essential to your good health, but will cause intensified WED/RLS symptoms for a period of time (a few days, a few weeks maybe).

What is your doctor like? Will he/she be receptive to learning more about RLS/WED? If possible, print the last two papers in the second link below, and Dr. B's response to you, and take them in with you. Ask him what he thinks of the papers.

Let us know your next steps. I hope this all works out well and easily for you.

[crl363]

I know my dose is high (10mg/day) and I know it is commonly suggested to come off of ropinirole when the dose gets this high. I’m not sure why. When I tell my doctor I want to come off and get put on an opioid she is going to ask why. I’m not sure how to answer her question.

[rthom]

These easy answer is that the longer and higher your dose gets, the worse your symptoms are going to get and the harder it is going to be to get straightened out. Also It has been discussed here a lot about whether or not your symptoms decrease back to where they were before the meds after augmenting, the consensus seems to be no. So you want to get off before your symptoms climb any higher if at all possible.
Hope that helps. If it doesn't make sense, let me know.

[crl363]

I’m not sure if I'm following this. My very limited understanding is when you get put on an opioid it will help you wean off of ripinirole. After a certain period of time you can lower your opioid dose as your symptoms subside. In time, if you have to go back on a dopamine agonist the dose is much lower but eventually the cycle repeats itself. I’m sorry about my confusion on this.

[rthom]

that's it
The only question is in how much it lowers (your symptoms), the longer you augment the worse your symptoms and people haven't found that when they go off the symptoms go back to where they were (and in some cases not even close), so as soon as you start to augment you need to stop the meds, in order to stop the increase in symptoms.
Does that help?

[crl363]

So you have a much greater chance of reducing your symptoms before augmenting than after augmenting? After you start augmenting you are less likely to reduce your symptoms?

[rthom]

True. But both the DA,s and opioids have an affect. While the opioids are not known for "augmenting", they can seem to cause symptoms that mimic WED when you have been on them for an extended period of time or are trying to go off them. The best result seems to be keeping doses as low as you can while alternating between the different types of medications. Neither of them provide good results if you stay on one type only over an extended period of time.