My doctor suggested mirapex. I haven't heard off this and will do some research on the boards.
Mirapex/pramipexole is one of the dopamine agonists used to treat Parkinson's and WED/RLS. Most specialists agree now that dopamine agonists such as Mirapex should not be tried in WED/RLS patients unless anti-convulsants (gabapentin, pregabalin/Lyrica, gabapentin encarbil/Horizant) are unsuccessful. The reason for this is that dopamine-type meds cause augmentation - they worsen the disease over time. Symptoms increase in severity, start earlier in the day, and spread to other body parts. It is also agreed by a number of experienced practitioners that the starting and maximum doses of dopamine agonists should be much lower than the FDA approved doses; specifically, Mirapex starting dose should be 0.125 mg and maximum dose should be 0.25 mg
. (see extracts below from a paper in a medical journal). So - if you end up on Mirapex, don't take more than 0.125 mg to start, don;t ever go above 0.25 mg.
If the ferritin concentration in your blood is less than 100, you are more likely to augment on dopamine agonist medications. Also, your symptoms are more likely to be severe. So whether or not you take Mirapex, you should get your iron bloodwork done , and ask for the ferritin number (not just whether it's normal or not). If it's below 100 (and your doctor is not concerned about iron overload), then start taking oral iron supplements - one or two pills of ferrous sulfate (each with 65 mg elemental iron) with 500 mg vitamin C on an empty stomach once a day. This should help your symptoms ( I seriously notice mine if I stop taking iron), and will protect you somewhat from augmentation if you take Mirapex.
I am so angry that yet another person has to suffer NEEDLESSLY. I won't go on about it - ten years stable - argh. But there is a bright side, your body will get to recover from whatever ill effects the opioids were causing (they mess with the endocrine system, and probably a lot more). And maybe if you do start back up, you will need less than before.
Gabapentin is erratically absorbed; if you have good insurance, you're prbably better off with Horizant.
As you go thru this process, don't neglect to describe what's happening to your doctor, in terms of how it's impacting your life, with specifics. He should know the results of his decisions (eg. I get 3-4 hours of sleep a night; I wake up two or three times every hour; I went to work but couldn't actually function so three days in a row I had to go home; I can't care for my kids properly; I had to cancel all my appointments; etc whatever is true of your life.)
I would do as Ann suggests, too - start to shop around for another doctor.
From Buchfuhrer, Mark J., Strategies for the Treatment of Restless Legs Syndrome; Neurotherapeutics (2012) 9:776-790
Both of these drugs should be started at their lowest dose
(ropinirole at 0.25 mg and pramipexole at 0.125 mg) and
increased if necessary every 5 to 7 days by their initial dose
until symptoms are controlled. Although the FDA-approved,
maximum doses for ropinirole and pramipexole
are 4 mg and 0.75 mg, respectively, many physicians exceed
this dose, especially when treating daytime symptoms that
may require 1 or 2 additional doses per day. However, after
10 to 15 years of experience with these drugs, concerns
regarding augmentation of RLS symptoms by these drugs
have made many RLS experts rethink the doses used to treat
RLS, and even whether these drugs should be first-line
drugs of choice for this disease. Due to concerns regarding
augmentation of RLS, in the opinion of this author and
several other RLS experts, the maximum doses of dopamine
agonists should be much lower than the approved FDA
doses (such as 0.25 mg for pramipexole and 1 mg for
ropinirole). However, augmentation may occur even at the
lowest doses of dopamine agonists.