Restless Legs Syndrome (RLS) Discussion Board

How is everyone? It's been 11 Days since my 1000 mg ferritin infusion. I called the doc yesterday to report on my status. Haven't recevied a call back yet. Legs weren't too too bad yesterday morning and I thought day 10 might be my upswing, but today legs are crazy. Still waking at 4 am and twitchi...

My hemotologist has agreed that for me, I need to keep my ferritin around 150. When it goes down, I start kicking and he allows the iron infusion. I am very fortunate that he goes by my symptoms and not my levels. I questioned my worry that an iron infusion would make my ferritin go too high, but he...

Yes, infusions help both my RLS and energy level. However, I can tell when my ferritin is going down when my RLS symptoms act up. Are you asking if I get infusions when my ferritin is above 150? My "magic" number for my ferritin seems to be 150. - it was 149 in May and 117 in August - the ...

It usually gives me relief after a few days after the infusion and lasts for 3-4 months. Sleepyred - how many is a few days? It is now Monday and if anything I feel worse . . . It's hard to say - but for my 1st infusion - it took at least a month (my ferritn was so low) 2nd - about 2-3 weeks, and m...

Sleepyred - didn't the benedry make your legs crazy? I've been told to steer clear of antihistamines. No the benedryl did not bother me - except for making me so tired for 24 hours. I do not use it at all, except when I have an infusion. However, I've never had a reaction to the iron, so I only get...

I have had 3 iron infusions - my 1st one was the largest dose - they gave me a test bag with 50 mg. of benedryl. When I did not react - they continued it. I have had 2 since - with no reactions - they give me the benedryl as well. My ferritin levels need to be above 150 to even touch my restless leg...

After 2 iron infusions, my doc (sleep) and hematologist agree that my ferritin must be over 150 for my RLS to be under control. Even with this, I have to take .125 mirapex at night (down from .5 of mirapex and 1mg of klonopin). So far, insurance has covered it - I took iron for 3 years and completel...

Thanks for your responses - this is a great forum with a wealth of information - thanks for the link to the algorithm!

Sleepyred

So are you saying that if I'm a lucky one of the 20% where the infusion helps, I'll need more? Or is that what time will tell? Do you know how long it takes for it to "peak"? My doc is hoping that one infusion will do - I'm not quite sure why and am searching ans searching for answers - if there are...

Yes - fuzzy math!!!!!!!!! Oops - 3 1.25 mg tablets.) He is hoping that I have secondary RLS and that my iron infusion will bring my ferritin above 60 (it's 22 now). I will have to talk to him If my symptoms return....I am on Clonazapan 1 mg. which helps some. keeping my fingers crossed! Sleepyred Le...

He is hoping that I have secondary RLS and that my iron infusion will bring my ferritin above 60 (it's 22 now). I will have to talk to him If my symptoms return....I am on Clonazapan 1 mg. which helps some. keeping my fingers crossed! Sleepyred I'd follow the advice of the doctor. At a low amount, I...

I had an iron infusion and have augmented to Mirapex. I take 0.375 mg. per night. (2 0.125 mg. tablets).

Do I need to wean off of this? My doc said to just stop, but I've read that you need to wean slowly -

Anyone had experience with this?

TIA,
Sleepyred

Hello everyone! I've been "lurking" on this forum for a while now. I am on cpap therapy for UARS (form of sleep apnea) and have suffered from some sort of RLS since I was a child. Here's my story, which I hope is not too long! As a child, I was very active (I'm 48 now). When I was 5 or 6, I began to...