Restless Legs Syndrome (RLS) Discussion Board

Hi Conger-- I read your post and see that you were to see a RLS specialist at Vanderbilt. If you're still reading here, please let us know how things are going for you. It sounds like you've had a rough journey.

Referencing Nightwalkers Spring 22 edition, "Ask the Doctor: column. Dr. Denise Sharon answered a question about RLS symptoms by suggesting Iron Stores testing, "including blood work for ferritin, transferrin saturation and iron-binding capacity". I know about ferritin and RLS, but this is the first...

I augmented about 4 years ago on 0.375 mg pramipexole, got off it (one of the most memorable and awful experiences of my life) and stayed off it for a few months. I was subsequently able to restart pramipexole at 0.0625mg daily (one half of the smallest size tablet). It helped a lot, and I never ha...

I've been taking an oral iron supplement for about 7 years. I still get breakthrough RLS, but am lucky that the increased ferritin value has mitigated my RLS.

At my Annual Medicare Wellness Exam my labs showed a Ferritin of 135, which is the first time it's been above 100 after several years of oral iron supplementation (Initial ferritin value was 19). Still using pramipexole 0.125 mg as needed -- 1 or 2 times weekly

One thing that reading on this board for many years has taught me is the importance of finding a Healthcare provider with expertise. As I've aged, I've had to seek more medical treatment for a number of things. It pays to do the work of research to find the best doctor to address your needs. This ca...

In the Fall edition of Nightwalkers, the RLS magazine, the RLS Medical bulletin said that Iron supplements should be taken in the evening with 250 mg Vitamin C. Why in the evening and why with Vitamin C? In an interview with RLS specialist Dr Buchfuhrer he said that taking pramipexole no more than 3...

My RLS is intermittent. Over the last decade I've experimented with different physical treatments for RLS. Exercise is one of them. If I exercise moderately or intensely too close to bedtime I frequently get RLS. If I exercise lightly, say stretching, close to bedtime I usually don't get RLS. Consis...

Melatonin is part of the sleep picture for me. I took Ambien for a long time and found that it was not helping me get to sleep and causing a drug hangover in the morning. I had tried melatonin unsuccessfully a few times in the past, but read in a book Sleep Through Insomnia, by sleep physician Brand...

I'm happy to read that you were able to bring the doctor around to your side by giving him the article.

Thanks for the informative replies and options to consider

I've been taking pramipexole, 0.125 mg, as needed. Since achieving a ferritin level of 100, I have only needed to take medication intermittently. The problem I've had is that by the time I have restless legs, it is usually around bedtime and the med takes a couple of hours to kick in. Then I can't g...

Holland, I'm not quite understanding you about higher Ferritin levels being due to something else. What else? I've read about a number of people with RLS who have, with oral iron, raised ferritin to close to 100, as I have. How soon after you augmented on pramipexole did you start a reduced dose of ...

I was able to to increase my ferritin level from 19 baseline to about 100 using OTC iron tablets, where it has stayed for over two years. It has significantly reduced my RLS. I take pramipexole 0.125 mg as needed and have not augmented despite about a decade on this med. Part of this is no doubt due...

I am one of those with RLS (mild to moderate) who has benefited from oral iron. My ferritin was 19 when I first started taking an oral iron supplement. It has increased to about 100 and my symptoms have been alleviated to the point where I only take pramipexole 0.125 mg as needed.