What Choice Is Better?

[crl363]

I am on 10mg off ropinirole/day. I finally set up an appt. to see a neurologist. I have been self medicating (bad I know). I’ve had two dose increases in the last 4 months. I’m not sure what she is going to do but what if she wants to put me on gabapentin? Is it better to stay on ropinirole or go on a glutamate inhibitor (gabapentin)? I don’t like the idea of going on 2 drugs because I can barely remember yesterday. Is there an advantage of the two?

[Polar Bear]

I have WED/RLS 24/7. I use ropinerole at 4mg daily spread over the 24 hours and supplement it with tramadol and codeine.
I have never used gabapentin and someone will soon come along and give an opinion about it.

However 10mg ropinerole is way too high for WED. At 4mg I am on what used to be considered the daily max, I believe that is now considered too high.
I'm wondering how the doctor prescribed ropinerole in that dosage if he/she knew anything about the disease.

It would be great to just take one drug and get symptom relief but in reality it sometimes takes a cocktail of meds to come at it from all angles.

[ViewsAskew]

Oh my - that is much too much ropinerole, as Polar Bear noted. My guess is that you have augmented, meaning that the drug is making your symptoms worse. If she is an educated neurologist (about WED/RLS, that is), she will get you off the ropinerole using a strong opioid. She should not put you back on it. Once you are off the ropinerole and the symptoms have subsided - that takes 1 to 4 weeks - she will likely try you on pregabalin, gabapentin, or Horizant. If none of those work, it's time to try opioids.

Oddly, two drugs can be much better than one. You have fewer side effects from each because you are on a lower dose of each. And, each works slightly differently, so you likely get more symptoms covered.

[crl363]

Thanks a lot for the quick response. I agree with everyone that my dose is too high. I just don’t the best way get it down. I really don’t want to cold turkey. I’m not ready for that kind of a fight. I love the suggestion on how to approach this. Can someone post a link to any kind of literature to this method? The reason I am asking.

My brother is on 16mg ropinirole/day. You’ve got to love genetics . He had her for his neurologist and she was ultimately unable to help him. She never put him on an opioid which I'm sure would have helped him. I tried to get him to tell her but he didn’t. Everything I’ve read about her says she is an excellent neurologist and supposedly she is very accommodating. He just never said anything to her. That’s why I wondering if anyone had a link to something. More ammunition for me if it (probably) comes to that. Thanks again to everyone for all the help.

Bob

[ViewsAskew]

Yes - there is literature to help you.

First, if you want to spend $30 to have an excellent resource, by the 2nd edition of the book Clinical Management of Restless Legs Syndrome. It has dosing for everyone medication, how to resolve augmentation, and so on. It's written for primary care doctors to treat WED/RLS.

There are many posts here about it and several with links to papers. One of them is here: viewtopic.php?f=5&t=8463&p=68794&hilit=+augmentation#p68794

But, do a search on augmentation and you'll find more information, and potentially more links.

As far as I know, there is only ONE way to deal with augmentation without going crazy. That is to use an opioid to get off of the dopamine agonist. You can go cold turkey and take nothing, but most of us can't manage more than 3 - 4 days at most before we give in and take it again.

[crl363]

Thanks so much for the links! I now will have the support that I will probably need. She may start me on gabapentin because that is how she started my brother off. That’s ok because in the end I can present your option. Looks like cold turkey isn’t an option. If most of you only lasted a few days than I have not shot at that. Thanks again for all the help.

Bob

[ViewsAskew]

Thanks so much for the links! I now will have the support that I will probably need. She may start me on gabapentin because that is how she started my brother off. That’s ok because in the end I can present your option. Looks like cold turkey isn’t an option. If most of you only lasted a few days than I have not shot at that. Thanks again for all the help.

Bob

I forgot one other option. Dr Buchfuhrer, one of the doctors who wrote the book I recommended above, answers patient letters. He has a website and there are 100 pages in it of his answers. Write clearly, include your medications, how much, your history, and so on. He'll respond with advice. Additionally, he will usually talk to any doctor who wants to ask for advice. The website is rlshelp.org. His email is somno@verizon.net, I think.....

[cornelia]

Although I am sure that dr B has a very good reason to not post anymore Q&A's anymore, I am sorry to read that. I have never ever forgotten to read them and learned such a lot from him. Gosh, it really has to sink in.

Corrie

[crl363]

Well, I have ordered the book and downloaded the recommended articles. I have also sent of an e-mail to Dr. Buchfuhrer. I must say I am excited and looking forward to addressing this. Based on everyone’s advise and some of the articles I have already read, I know if my neurologist eventually doesn’t put me on an opioid I will find one that does. Thanks again to everyone!!

Bob

[ViewsAskew]

Although I am sure that dr B has a very good reason to not post anymore Q&A's anymore, I am sorry to read that. I have never ever forgotten to read them and learned such a lot from him. Gosh, it really has to sink in.

Corrie

Corrie - he didn't tell me that, I just haven't seen any new ones in a long time. But, lo and behold, I went there today and there they are. The last page I saw go up was 99. Today I see through 104. I wonder if I had a dead link? How odd.

Forget what I wrote!!!!!

[Polar Bear]

[cornelia]

Very odd indeed!

Corrie

[ViewsAskew]

Very odd indeed!

Corrie

For the last year, anytime I went there, I saw NO new posts. I did extensive research on the site about three weeks ago - I used the search function and nothing showed up past page 99. That's when I decided he must have stopped posting them. And all of the sudden, there there were!

[badnights]

Maybe he was just getting behind, and all these emails were back-burnered and building up. If it were me who had started something like that, it would have become a chore by now, as opposed to a passion. It is a heavy load for any one person to take on! I am in awe of Dr B.

[oceanwalker]

OMG Dr Buchfuhrer certainly helped me !!! when I first started. I did not take his advise. Instead (becos I was totally ignorant and now know more thanks to everyone's support here) I just took the DA (ropinirole) . Anyways I found Dr Buchfuhrer from ourGlobal NDr Buchfuhrerews Hour here (Dr Art Hister) I wrote Dr Art Hister a letter about my RLS and Dr Buchfuhrer answered many times. He was totally informative and emailed so much info (the info I did not heed due to ignorance) via PDF. I did not know he would actually speak/contact? any doctor. I would like to know if anyone here has ever had Dr Buchfuhrer get in touch with their doctor?? Thank you so much. And TY for sharing.