Restless Legs Syndrome (RLS) Discussion Board

I haven't been here for a few weeks and found this recent thread very interesting. My personal story is that I was diagnosed with RLS about 15 years ago, possibly from low ferritin as a result of being a blood donor. At any rate, the sleep medicine doc prescribed 0.125 mg pramipexole and I've been on it ever since, without augmentation. Several years ago, my PCP did an iron panel and my ferritin was 19 (All of Complete Blood Count tests were completely normal.) I started on a daily iron supplement and have gradually got the ferritin >100. I don't need pramipexole every night, but the problem is that if I do need it, and take it when I go to bed and notice RLS, it takes about 2 hours to take full effect.

To Wendy: I've been a member at the Restless Leg Syndrome discussion board for many years. It is one of the best sources of helpful and accurate information around.

Thanks for your response. Glad you have found something that works for you.

I'm still titrating up on the Pregabalin that was prescribed for me on 3/13. Currently at 100mg. I tried titrating down on the Pramipexole from .25mg to .125 after a couple of weeks on the Pregabalin, but found I still couldn't sleep because of RLS. I'm now on 3/4 of .25mg of the Pramipexole.

I also received an IV iron infusion 4 days ago. Unfortunately, the doctor who prescribed the infusion changed his mind about the quantity of iron I was to get and cut it in half. I didn't know until I showed up for the infusion. He said he was worried about my getting too much iron since Ferritin was 29 but hemoglobin was normal. Now I will have to wait 2 months and take another blood test before potentially getting more iron. I didn't realize this was even something doctors could do. Is it common, I wonder?

I read about something called lactoferrin to improve iron absorption. If anyone has any experience with it, dosage, type, I would be very interested.

Thanks in advance.

I'm not familiar with lactoferrin...

(I had a doc change their mind about getting ANY iron after they already had me connected to the iron! Soooooo frustrating.