Restless Legs Syndrome (RLS) Discussion Board

I had my first iron infusion Wednesday (200mg) and I have my next one on Monday. Then there’s a break and we’ll do the 2 infusions 2 more times. How long after the last series of infusions should I try a night without medication? I know everyone is different, but about how long does it last before you need medication again? My problem is I’ve tried almost every medicine for RLS. Ropinirole (severe augmentation), Mirapex(didn’t work), Gabapentin (does nothing), clonazepam (couldn’t tolerate, vomiting), Pregabalin (does nothing), oxycodone (works, but had horrible itching and sweating) and last of all is Neupro. (I have to wear 2 4mg patches; leaving one on for 48 hours and applying a fresh one every day and after 4 years on and off with Neupro I’m beginning to have augmentation some and a couple of months ago I started having severe edema in my ankles. Doctor ran tests on heart, kidneys and liver and there’s no problem. Edema is a side effect of Neupro. So, at this point the infusions are my last hope.

There is a lot of variation, however, for most people, it takes a few weeks for the iron to have a noticable effect. The first set of IV iron infusions last the shortest time, 6 months or so is common, however, again, there is lots of variation. Subsequent infusion sets last longer, usually about a year.

It takes me MUCH longer than most. They typically say it takes at least 3 and up to 8 weeks. Often takes 11 or 12 weeks for me. I never stop the medication, rather I start to decrease it around 6 weeks. So, you might first take off the old one after 24 hours and see what happens. If I am successful, I reduce a bit more, etc. BUT, for me, I don't get 100% coverage from the infusions, rather about 50%. I reduce until the symptoms are no longer covered. You might try 2 MG patches, also, to see what happens.

Hope it helps.