Restless Legs Syndrome (RLS) Discussion Board

Gahh!! I am so frustrated. First my insurance wouldn't cover a visit to the RLS specialist in my state, and now it will only cover 2 IV iron preparations that are not supported by RLS research. I specifically requested 1st choice, Injectafer, 2nd choice, InFeD; and was told I could only get Venofer (iron sucrose) or Feraheme (ferrumoxytol). I have read the entire extensive article on iron for RLS and understand the limitations of the various studies, but wonder if anyone out there has any personal experience or knowledge about these other 2 iron preparations (Venofer and Feraheme) for RLS. Once again, I might be able to go "out of network" and pay out of pocket to get the Injectafer, but is it worth it? given the state of our wonderful health care system it could take months and hours of work and documentation for me just to change my insurance plans, and meanwhile, every day I delay getting my iron infusion my brain continues to demyelinate... any ideas??

For what it's worth, over the years I've had all of the formulations except Infed, and they all have worked to raise my ferritin levels and make my RLS much less severe.

The big issue is that for Venofer, Ferroheme, Ferlecit, and the generics of those is that it takes 5 weekly infusions, versus 2 for Injectafer, and one for Infed.

I'm in a waiting period for my infusions as well, but it has nothing to do with what insurance will cover and more to do with an arrogant hematologist who can't be bothered to study up on how low iron affects RLS.

If it were me, and I was going to pay for it myself, I would try to get Infed and get it done in one infusion. I know when I got Injectafer it cost $2000 per infusion, and it took a year to pay it off.

Thanks. My neurologist, who admitted she has never treated an RLS patient with IV iron, said she would send the order to the hospital (I decided to go with Feraheme in 2 doses) and someone would contact me. it's been a week and no one has contacted me. so once again I have to prod my doctor. If any other professional was that unreliable and lazy they wouldn't stay in business, but doctors get paid no matter how substandard their care is.

sorry about my doctor bashing, just extremely frustrated, not to mention anxious and depressed. I finally got scheduled for my Feraheme infusions, 500mg in 2 doses a week apart. Hoping for a miracle! I should consider myself lucky since reading on the UK forum it sounds like they have great difficulty getting IV iron over there (although fewer problems getting methadone or buprenorphine.).

I live in the UK and have had RLS for 40+ years. Never has IV Iron been suggested as a treatment. That includes my wonderful and most helpful Consultant in the Movement Disorder Clinic. I have an upcoming appointment and it may be interesting to discuss this with her, just to see if it is something on her radar.

I’ve had just 2 infusions of Iron Sucrose (Venofer) and while I also was upset to not be offered the Mayo Clinic “gold standard”, these 2 infusions did raise my Ferritin (along with continuous daily oral iron pills) from 14 to 132 over 4 months.

This is good to hear from Sunflower and Susan that iron sucrose actually does work too - at least for some of us.

Here's my follow-up so far. I received Feraheme in two 500mg infusions a week apart. I didn't mind going twice because the infusion clinic and my infusion nurse were very nice and they gave me snacks and cranberry juice. Spent the time reading. No side effects.

As of 4 weeks after the second infusion I hadn't noticed any improvement in my PLMD or sleep and I was getting discouraged. But then this week (week 5) I noticed, for the first time in months, I can nap! I don't know if it is the iron or something else but to be able to nap again is bliss. Before I could only lie down, exhausted, and start to twitch--couldn't rest my brain the entire day, every day.

Now, I haven't had any twitching during the day! And the naps are even restorative. Next I will try and decrease my night meds to see if the improvement extends into the night as well.

I get my ferritin,etc, rechecked in 13 days and I will post my results. Fingers crossed.

It's the iron
That's about the timeline I had