AUGUST 2020 - New Members

Whether new to RLS or new to the site, we welcome you and invite you to share your history and experiences with RLS/WED, introduce yourself, and ask questions. Successful treatment starts with a solid understanding of this disease.
Rustsmith
Moderator
Posts: 6476
Joined: Sat Sep 28, 2013 9:31 pm
Location: Colorado Springs, Colorado

Welcome to RLSandra

Post by Rustsmith »

Monday, August 31

Welcome to

RLSandra, who has had RLS for over 30 years and it has gotten so bad she cannot go out to dinner with friends or out to a show and sit for the entire time unless she takes an extra dose of medication just before leaving home. Then she is at her husband's mercy to keep nudging her under the table to stay awake or if sitting at her right at the theatre so I does't fall over if she falls asleep! She would like to try other medications but her RLS gets so bad when she tries to ween down to change that she walks holding on to her walker in tears! She has to go back on ropinerole and take a dose and then another and keeps going until she gets to the point where it begins to kick in and she almost feels like she is going to collapse from exhaustion and relief.

There is a very good chance that you are experiencing augmentation if you are having to take high doses of ropinerole and have been on it for a long time. Augmentation is a side effect that many doctors do not know about and do not understand how extremely difficult that it is to stop. You may need to ask to be referred to a movement disorder neurologist who is familiar with treating RLS patients who are experiencing augmentation to be able to switch. In your situation, there is a good chance that this will require the use of a low dose opioid for a couple of weeks as you get off and possibly as a long term replacement for the ropinerole.
Steve

https://www.mayoclinicproceedings.org/a ... 0/fulltext
Opinions presented by Discussion Board Moderators are personal in nature and do not, in any way, represent the opinion of the RLS Foundation, and are not medical advice.

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