Severe RLS/WED for over 20 years

[KDecker1612]

I was diagnosed in my mid 20's. My doctor sent me to a sleep specialist who prescribed Mirapex. It was miraculous! The miracle lasted for years for me, though I was gradually increasing my dose. By the time I hit my late 30's, I was at maximum dose of Mirapex, taking 1800mg gabapentin and Klonopin (don't remember dosage) - and still having symptoms. I took a "drug holiday" - hell on earth! For almost 3 weeks, I was on my feet about 98% of the day and night. I slept about every 3rd day for a couple of hours. Then I went on Requip. It worked ok, though I didn't like how it made me feel, and I was more sleepy during the day on it. I took it for a year, then switched back to Mirapex, .25mg - and it worked like a miracle again. As I'm sure you can guess, that didn't last. It was gradual, but now I am back up to 1.5mg daily and 300 mg of gabapentin. I have symptoms, which I deal with by walking and stretching. I have noted an increase in daytime symptoms and the occasional symptoms in my arm or hand too. I am not under a specialists care, as my insurance won't cover it. My doctor is good, but not an expert. I am interested in learning more about this disease and the various treatment options out there. the thought of another drug holiday makes me feel panicky.

For me, caffeinne is a huge trigger, as is excessive sugar. Not sure about aspartame.

One interesting thing I noted since I joined - last year I went on the Atkins diet and lost 70lbs. I gradually changed back to a regular diet, meaning I eat whatever I want, lol. But I realized that for several months during and after the diet, my legs were better. They have gradually gotten worse since then. Was it the increased iron from all the red meat? Was it the weight loss? Was it something in the chemistry of the primarily meat, cheese and eggs diet? Or am I now augmenting? Such a confusing disease!

[Polar Bear]

Confusing is only the tip of the iceberg !
Extra iron from meat etc might have helped your symptoms, but please have a ferritin serum level test done. A blood test not normally done as routine and you really want the levels up at around 100. Ask doc for the figures so that you know exactly what your ferritin is at.

I am not under a specialist care.
My GP helps by working with me and I have the book - Clinical Management of Restless Legs Syndrome by Lee, Buchfuhrer, Allen and Hening (second edition). These Authors are at the top of the league when it comes to the treatment of WED/RLS. It can be found on Amazon. I mark this book with post-its and pencil and my GP is happy to use it for reference. It covers just about any aspect of WED/RLS that you could think of.

I applaud anyone who copes with a drug holiday - not easy.

[ViewsAskew]

It certainly can be confusing.

I would be a bit concerned about the amount of pramipexole you are taking. It's not high compared to what they used to say was OK, but current recommendation is to take no more than .25 mg a day. When you have a gradual increase in less than a two year period, it's almost always augmentation.

Have you tried any opioids? You may not need to take them forever, but they could help you stop the pramipexole so you can reassess. Once you're off it, you could consider alternating pramiepexole (no more than 5 days, say) with 2 days of opioids. Then you wouldn't augment, nor would you become dependent on the opioids.

[KDecker1612]

Thanks for the advice! I have an appointment with my doctor today and have printed out a bunch of information from the member's only site. I had a fasting blooddraw about a month ago, I'll ask if my ferritin levels were checked. I shudder at the thought of going off the pramipexole, but realize I may have to.