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[SleepyCharlie]

It is good to join a group to support my RLS. I have had RLS for 20 years. I was fortunate to find a great physician early on to treat my symptoms. I am 63 years old, taught elementary school for 34 years, and among other things, currently babysit my grandkids in my retirement. Symptoms were controlled the first 10 years with Sinemet. Then Mirapex (.75mg) at bedtime worked for 10 years. I added Vicodin (10mg) and cut down the Mirapex to .325mg for 2 more years. Now I am cutting the Mirapex down further due to some increased symptoms: .25mg at bedtime with 15mg Vicodin, split into two doses, 5mg at 6 pm and 10mg at 8pm.

My concern is with the safety of Mirapex and the withdrawal symptoms. I was able to successfully cut down the Mirapex to .25mg with 15mg of Vicodin. When I tried to cut down to .125mg of Mirapex, the symptoms recurred in early morning and early evening.

I look forward to sharing what I have learned about this troubling condition and getting some new ideas for coping with my RLS from the group. SleepyCharlie

[ViewsAskew]

Welcome, SleepyCharlie. Sounds like you've been blessed with a good doctor.

Looking forward to seeing more posts from you.

[Chipmunk]

Welcome! Glad to have you!

What concerns do you have about the Mirapex? (just curious if it's anything I should be watching for as I take it on occasion).

[SleepyCharlie]

Tracy,

Mirapex has been a bit of a miracle drug for me, as it worked very effectively for 10 years. Then I began to get augmentation (more RLS symptoms in the morning and daytime). When I cut down the dose the augmentation effects went away. The augmentation has returned, so I'm trying to cut down the dose more. The last three days have been tough because I'm awake with symptoms at 4:30 am and have other symptoms during the day. I phoned my doc today, and she said I was trying to cut down too fast, so I'm going back to the lowest effective does and staying there for a few more weeks. Hopefully it will work. If you are using it occasionally, you should not have this problem. Thanks for asking.

SleepyCharlie

[Betty/WV]

Reading your posts about Mirapex! Some of you say you take it occasionaly. How and why do you do that? I think if I took it just once in a while, good ole monster, WED/rls would be popping his head up.........I have read of ones who take Mirapex a few days at a time and then take somthing else for a while. This is supposed to help keep from augmenting. I would like to do that but don't know how.

This disease and the medicine for it is all so confusing.

BETTY/WV

[ViewsAskew]

Betty, I am one that alternates it to keep from augmenting.

You have to have a non-dopaminergic to alternate it with. For example, you can't alternate it with Requip or Sinemet.

I alternate it with an opioid. This also prevents me from becoming physically dependent on the opioid. And, it makes the doctors a LOT more comfortable prescribing the opioid.

I have tried it multiple ways.

First, I tried taking it for 4 days, then the opioid for 3 days. I didn't like it because the worst of the side effects for both drugs were problems for me.

Then I tried 3/2. Same as above. So, then I switched to every other day, but I take Mirapex two days in a row on Tuesday and Wednesday. This works fine for me. It's not like having a life without drugs and drug side effects, but the RLS is under control and it's the best I've felt while on drugs.

[SleepyCharlie]

I had not heard of alternating opioids and Mirapex. I will share that idea with my doctor. She believes that the opioids are safer to take than Mirapex, partially because we have used the opioids for many years and know more about them. We don't really know the long-term effects of Mirapex on the brain. I had to add opioids to the Mirapex to deal with the augmentation I was experiencing with the drug. But Mirapex was effective for 10 years before I had any augmentation. I'm down to only .25mg at bedtime to control RLS now, with the addition of 15mg of Vicodin. Hopefully that will last for awhile.

I was hoping to get off of the Mirapex entirely. Is there anyone out there who has successfully gotten off of Mirapex? What medication are you taking instead for RLS?

[ViewsAskew]

I did get off it completely in 2004 when I augmented terribly. It is quite hard to do for many of us.

There is a book I call the Little Green RLS/WED Bible - it's called "The Clinical Management of Restless LEgs Syndrome," and is written by Wayne Hening, Mark Buchfuhrer, and Hochang Lee.

There is a whole chapter on resolving augmentation.

The gist, as I understand it, as that opioids are the primary drug used.

"When RLS continues to worsen despite an escalation in the dopamine agonist does, it's time to stop the medication and change therapy. Typically, medium-to-high potency opioids can be used to treat the marked exacerbation of RLS symptoms that occur upon withddwawl of the drug. After several weeks, another dopamine agonist may be kept at a low dose."

My doc used methadone and it worked very well. It took about 3-4 weeks for the increased symptoms to subside. .

[SleepyCharlie]

Ann,

Thank so much for that information. I actually have another book by Buchfuher, Restless Legs Syndrome (2007). I will take another look at his chapter on augmentation.

SleepyCharlie

[ViewsAskew]

Oops, I'm more awake than I was when I wrote the above, lol. My post was misleading - it's a whole chapter on handling hard to treat RLS, including augmentation.

I have the other book, also, but this is definitely a worthy book to get.