Restless Legs Syndrome (RLS) Discussion Board

We couldn't afford the Injectafer either and went with the LMW iron, which worked wonders. It was about $415 out of pocket for the infusion and the nursing care to give it. We got another type 1.5 years prior to this, and it did nothing. I think Injectafer and LMW are the only twp to try. I had to fight to get the LMW iron as the pharmacist was not familiar with it and was concerned about anaphylaxis and wanted to give it over 8 hours. Got the protocol that Stanford and Johns Hopkins uses and that took care of that problem. Good luck, I hope you feel better.

2restless wrote:We couldn't afford the Injectafer either and went with the LMW iron, which worked wonders. It was about $415 out of pocket for the infusion and the nursing care to give it. We got another type 1.5 years prior to this, and it did nothing. I think Injectafer and LMW are the only twp to try. I had to fight to get the LMW iron as the pharmacist was not familiar with it and was concerned about anaphylaxis and wanted to give it over 8 hours. Got the protocol that Stanford and Johns Hopkins uses and that took care of that problem. Good luck, I hope you feel better.

Yeah, the cost out of pocket is CRAZY!!!!

I had to explain it to this doc - but he really was on board when I showed him the study. I had the pages marked on my phone, so I could go right to the salient points. He read them and said yes.

So glad it worked so well for your husband!

ViewsAskew wrote:

2restless wrote:We couldn't afford the Injectafer either and went with the LMW iron, which worked wonders. It was about $415 out of pocket for the infusion and the nursing care to give it. We got another type 1.5 years prior to this, and it did nothing. I think Injectafer and LMW are the only twp to try. I had to fight to get the LMW iron as the pharmacist was not familiar with it and was concerned about anaphylaxis and wanted to give it over 8 hours. Got the protocol that Stanford and Johns Hopkins uses and that took care of that problem. Good luck, I hope you feel better.

Yeah, the cost out of pocket is CRAZY!!!!

I had to explain it to this doc - but he really was on board when I showed him the study. I had the pages marked on my phone, so I could go right to the salient points. He read them and said yes.

So glad it worked so well for your husband!

Hi, do you have early onset (<36 years) or late onset RLS?

I haven't had an infusion but my iron is coming up with my iron prescription. Some must be getting through to my brain because my symptoms are not as bad but still regular through the night.

I must have late onset (around menopause) but it is hereditary. My dad had a bad case, most of my nine siblings and many cousins. Mine is the worst.