Ropinirole

[jimindigo]

Anyone any knowledge of this drug for RLS?

[Madlegs1]

Yes- it comes up occasionally (being ironic) here!

I suggest you use the search button above to find out what you want to know.

What is your rls history- have you always had it, what other medications have you been on and what has been your experience with them?

That should get the conversation started ! 😊

There are many people here who have extensive knowledge of that particular medication .

Cheers.

[howlinwoolf]

Yes. It's a Parkinsons med. It has a high side effect profile and has the tendency to work for awhile and then RLS comes back with a vengeance. Have you discussed gabapentin with your doctor? I don't know what others have experienced but it has helped me--some side effects but nothing like ropinirole.

[valerita1 in reply to howlinwoolf]

I've had ropinirole for years but never any side effects.. mind you they don't work any more Iknow standing up is the only time I don't suffer but of course I cant sleep either. It started at age 18 & I'm 85 now & I've never found relief from any medication.......

[valerita1]

yes Ive been on it for years...the first one worked I had a lovely nights sleep but as time has gone on Im taking more & more each day (& night) but they don't work anymore It drives me mad the most sleep I get any night is 1-2 hrs.. if Im lucky. As soon as I lay down it starts so I spend the night sitting on the edge of the bed banging my feet on the ground I really don't know how I stay up all day,fortunately I'm retired.........

[Madlegs1 in reply to valerita1]

Check out augmentation on the rls-uk.org site.

[Joolsg in reply to valerita1]

Augmentation. Like madlegs says, use search engine. Ropinirole stops working and makes rls worse so you have to reduce dose slowly over months/ weeks while taking tramadol or an opiate like oxycontin because it is difficult.

After you get off ropinirole, discuss a long term alternative like gabapentin or targinact( oxycontin with a drug to prevent constipation). NICE specifically allow it for RLS in UK.

Once off ropinirole, you will get some relief/sleep.

Good luck,

Jools

[Joolsg in reply to valerita1]

Check out augmentation in search engine. You need to get off ropinirole as it's stopped working and is actually making rls worse.

Jools

[Hidden]

Jimindigo, if you have started Ropinerole already, then go no higher than 1mg... you need to keep the dose as low as possible because of augmentation. As others have said once augmentation sets in then you have to wean right off that med. Lots of posts and comments on this forum about augmentation which you will find from the search box, put augmentation. That is one of the big issues with taking Ropinerole. Any other side effects that can happen with taking the med should be in your leaflet which comes with your med.

[jk3842]

After a long term usage of Ropinirole you can experience augmentation which can cause the RLS to be very severe. I had this experience and got off the Ropinirole and then started taking Pramipexole but be aware that there a a small percentage of patients who take Pramipexole can experience a drop in your blood sodium levels. It happened to me and I ended up in the hospital for three nights. I was in one of the best rated hospitals in Atlanta but the doctors never could figure out the cause. After I got out of the hospital I did my own searches and found that there was a similar case in Korea. My situation was almost identical to the case in Korea. I got my doctor ( RLS specialist ) to help me to cut back on the Pramipexole and switch to new meds. I have had RLS all my life and I am 77. It seems to get worse as you age.

Even with my current meds of 600 MG Horizant and Hydrocodone and a very small dose( .125 MG X 2( of Pramipexole I still have RLS at times.

About 5 months ago even with my current nightly cocktail of drugs I started experiencing more RLS so after my own research and some desperation, I added (with a doctor's approval) some light marijuana in a pipe and / or a Vape. It seems to stop the RLS in its tracts. I now sleep 7 hours a night with my current meds & a little of the marijuana. I am currently living a fairly normal life with this new addition of MMJ. Yes it is not legal but desperation can drive you to dark places.

My point is you are going to have to be aware of and listen to your body. Your doctors on the whole will just continue to hand out meds but you have to listen to your body & understand and know your meds and their side effects. Do your own research as all RLS meds have side effects.

Regarding RLS doctors, all doctors are not equal. I think I have been through maybe 6 doctors until I found a good and insightful RLS specialist.

Good luck and try to understand your meds and your body as this an be a very frustrating journey.

[Hilaadcr3913]

I have had RSL for at least 25 or more yrs. I have been on Ropinirole for it. There is 2 types and I found that the. " "Ropinirole ER" (Extended Release) worked the best for me. .Unfortunately I'm on the highest dosage allowed. I started out on the 8 mg. But after awhile had to increase the dosage. Ropinirole ER has been a GOD SENT gift. If I forget to take it I suffer greatly. Ask about the about the extended release. The only draw back is, it makes you extremely tired so don't plan on going anywhere after you take it. I take mine about an hour before bed. Hope this info. Helps.

[Insomniak]

I would echo what Hilaadcr has said above - I have been using Ropinrole Prolonged Release for over a year and prior to that just regular Ropinrole for a couple of years. The day I started the medication the effect on my sleep was profound - i.e. I started getting some sleep. I now average about 6 hours of decent sleep per night which has allowed me to continue working in a reasonably high stressed work environment. Without Ropinrole I imagine that I would have not been able to hold on to my job. If I miss a dose I am in trouble within a few hours.