An old member just returning

Whether new to RLS/WED 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.
gowacky
Posts: 2
Joined: Fri Sep 21, 2018 5:47 pm

An old member just returning

Postby gowacky » Fri Sep 21, 2018 6:20 pm

So I’m 73 now and have had RLS all my life or just noticing it close to being a teen. It went undiagnosed until I was about 30 when listening to a medical talk show on the radio I realized they were talking about me! I immediately saw a neurologist and have been symptom free until lately. I hate it but the symptoms are creeping back into my life. I currently take 1.5 mg of Mirapex and 2mg of klonopin.

I’m wondering what other help may be available now and I’m interested in opioid therapy. I have pain from arthritis and permanent nerve damage from shingles so an opioid therapy approach sounds good to me but I need to find a neurologist that will prescribe opioids to other than terminal patients.

I’m happy this site has grown and I look forward to seeing what I can learn.

Best Regards,

Perry

stjohnh
Posts: 588
Joined: Sun Feb 14, 2016 3:13 pm
Location: Palo Alto, California

Re: An old member just returning

Postby stjohnh » Fri Sep 21, 2018 6:59 pm

Perry, Welcome back. 1.5mg mirapex is a high dosage. You may be augmenting. Discuss this with your neurologist.
Blessings,
Holland

gowacky
Posts: 2
Joined: Fri Sep 21, 2018 5:47 pm

Re: An old member just returning

Postby gowacky » Fri Sep 21, 2018 7:50 pm

I’m aware that I’m at the maximum dosage and I’m exploring ideas of what to do next. My neurologist has had an easy time with me as I’ve been symptom free all these years. As I understand it neurologists are divided in their opinion of opoid therapy. I’ll talk to him first but plan to find a doctor who is agreeable to trying opoids.

Rustsmith
Moderator
Posts: 3434
Joined: Sat Sep 28, 2013 9:31 pm
Location: Pueblo, Colorado

Re: An old member just returning

Postby Rustsmith » Fri Sep 21, 2018 9:49 pm

Perry, the current max recommended dose of pramipexole for RLS is 0.5mg, so you are quite a bit beyond that.

The other type of medication that is recommended for use with RLS these days is gabapentin, Horizant or Lyrica. These might be useful, but will not help you get off of the pramipexole. Quitting pramipexole can be extremely difficult unless you have an opioid to help cover the withdrawal period.

As for opioids, the doctors who understand RLS do not have a problem with prescribing opioids once you have "failed" the other two types of medications. If you think that you could convince your neurologist to let you try, this paper that was published earlier this year by Mayo Clinic might help convince him that it could be your best option.https://www.mayoclinicproceedings.org/article/S0025-6196(17)30825-X/fulltext
Steve

Augmentation Evaluation http://bb.rls.org/viewtopic.php?f=4&t=9005

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.

legsbestill
Posts: 482
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: An old member just returning

Postby legsbestill » Sun Sep 23, 2018 10:20 pm

The other potential treatment option is an alpha2delta ligand such as pregabalin or gabapentin. I know these are sometimes prescribed for back pain so maybe they would help with nerve damage also? I don’t know enough about them to say but they do work well for some for rls.

legsbestill
Posts: 482
Joined: Tue Aug 30, 2016 7:22 pm
Location: Dublin Ireland

Re: An old member just returning

Postby legsbestill » Sun Sep 23, 2018 10:22 pm

Sorry, just saw that Steve already mentioned the a2d drugs. My bad! They seem sometimes to be slightly less effective for those who have been through dopamine agonist induced augmentation - but may be worth a try ...


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