Ropinirole ER use for RLS

[erinrn]

Hi.
I am a 57 year "young" RN who has been living with RLS for 15 years. I still remember my starter pack of Requip and the 1st night that I actually slept through the whole night! I wanted to go to my neurologist's office in the morning and hug her!
Fast forward to now....augmentation and relocation along with new Doctors that are not experienced with RLS has ended up with me being on Ropinirole ER 12mg. I was on 8 mg ER prior for 1 year before augmentation started.
Is there anyone out there that is on, or has been on the extended release dose? It is not even FDA approved for RLS.
I am concerned that I'll get to the "max" dose and then will have no other treatment options. My current neurologist is unwilling to switch me to another medication. He supposedly "specializes" in movement disorders. I guess it's the "movements" of his patients right out of his practice!
Any thoughts, suggestions would be greatly appreciated. I did find a neurologist on the RLS site that is in my area, he doesn't have appointments until July, but I am going to schedule one with him so I can "move" right out of the current one's office!

[jul2873]

Hi Erinrn,

I am not an expert on RLS, but something in your note moved me. I am also elderly--much more elderly than you! My career was as a high school teacher, and I always felt close to nurses.

At any rate, I had very mild RLS for many years, but in my late sixties it got very bad. I started the doctor rounds, but since I was also reading this Board, I tried to stay away from the dopamine drugs (like ropinerole). I read about an herb called kratom that seemed to work like a mild opioid. I tried it, and have been using it for about ten years now. I have developed a little tolerance, but an iron infusion that one of my doctors ordered made my RLS so much better that the kratom still worked fine. I still use it, and now I use a little marijuana too, at night to fall asleep.

It sounds like you're in augmentation with the ropinirole. People on this Board who have been through it can give you excellent advice. Take care.

[Rustsmith]

Erin, I wasn't on ropinerole ER, but I did spend a year on the Neupro patch, which is also an ER type dopamine agonist.

You are already well beyond the max dose of ropinerole for treating RLS. The max dose of the non-ER form of ropinerole is 4mg for treating RLS. The fact that your doctor has gotten you into this mess isn't unusual. The knowledge of far, far too many doctors and especially neurologists is a big problem for RLS patients and the fact that your doctor is a movement disorder neurologist doesn't help.

So, as you already know, you need to find a new doctor and having to wait until July for an appointment is fairly normal. I just saw a doctor in my area who was supposed to be the best RLS neurologist in town. I waited for six months for an appointment, only to have her try to convince me to try Requip or Carbidopa/Levodopa just after I explained that I had augmented on pramipexole and rotigatine. It is getting bad when the patients know more about how to treat their conditions than the "specialist" doctors.

As for treatments after augmentation. Take a look through this paper. It should answer most of your questions. And for those of us who have been through augmentation, most of us are on opioids and have accepted the fact that we will be on them for the rest of our lives. Of the opioids, methadone is the most common.
https://www.mayoclinicproceedings.org/a ... 0/fulltext

[Polar Bear]

Erin..... I was on regular ropinerole for about 15 years. My GP knew little about the treatment of RLS. I was in the USA and saw an advert on tv for ropinerole, came home to the UK and went to my GP who prescribed it. The max was indicated at 4mg (but RLS experts would now say that 1mg should be max) and after a few years I ended up at 5 mg. I was clearly augmented and after several false starts I eventually weaned myself off. I now use Codeine (an opioid) and Pregabalin. The Pregabalin is prescribed for my leg neuropathy but a bonus is that it also helps treat RLS.

I also have Kratom and have used it on and off for several years. I was never sure just how much it actually helped and at present it's in a cupboard unused. Perhaps I wasn't using a correct dosage of the Kratom, and I was also wary of taking too much.

One thing's for sure, you need a good doctor and you need to get off the ropinerole, very carefully. When you read about coming off ropinerole, or any of the DAs, you will see that it is not easy. I managed it ok by taking the taper very slowly. Indeed I spent almost a year tapering while at the same time gradually adding the Pregabalin and Codeine. Many sufferers (braver than me) prefer the quicker method and prefer to deal with the more intense symptoms for a short period. You will find plenty of information on the Augmentation Forum and please don't hesitate to keep asking questions.

[erinrn]

I want to thank you for sharing your experiences and what has worked for you. Yes, I NEED a new Dr for sure! I am hoping that the new one will be the one to get me safely off the Ropinirole and on something else. When the new dose was ordered, the pharmacy had to order it and it took almost a week. I ran out of the 8 mg and did not sleep for 3 nights. So I have to see this current neurologist so that I can get prescriptions until I see the new one. I am going educate myself before I see him so that I can present my “case”. Who knows? Maybe he’ll join the foundation and become an expert!
Thanks again! Oh, and I am having iron levels done soon

[Polar Bear]

When having your iron levels done be sure and ask for your Ferritin Serum to be included as this is not usually part of normal blood works. Also be sure to get your Ferritin results ie the number, and do not accept to just be told it is normal. Normal can be anything from 20 to 400. An rls sufferer needs to be up around 100.

[badnights]

Hi.
I am a 57 year "young" RN who has been living with RLS for 15 years. I still remember my starter pack of Requip and the 1st night that I actually slept through the whole night! I wanted to go to my neurologist's office in the morning and hug her!
Fast forward to now....augmentation and relocation along with new Doctors that are not experienced with RLS has ended up with me being on Ropinirole ER 12mg. I was on 8 mg ER prior for 1 year before augmentation started.
Is there anyone out there that is on, or has been on the extended release dose? It is not even FDA approved for RLS.
I am concerned that I'll get to the "max" dose and then will have no other treatment options. My current neurologist is unwilling to switch me to another medication. He supposedly "specializes" in movement disorders. I guess it's the "movements" of his patients right out of his practice!
Any thoughts, suggestions would be greatly appreciated. I did find a neurologist on the RLS site that is in my area, he doesn't have appointments until July, but I am going to schedule one with him so I can "move" right out of the current one's office!

Gosh yes, get someone anyone different, and keep looking til you find one willing to learn about WED/RLS. You can get off the terribly high dose you're on, but it is best done with the support of a knowledgeable doctor. If you have any money at all, consider temporarily moving to somewhere where you can access an RLS Quality Care Center, or Dr B in California.