Question about IV iron for anyone who has gotten an infusion.

[Jademarie1]

Hey guys. Just asking this out of curiosity. But has anyone actually had RLS go away or improve after an IV iron infusion? I got one back in October and didn’t notice a perceivable difference. Pretty sure my levels are on the lower end now, so I’m getting an iron panel tomorrow but I just wanted to see if anyone’s experience would give me reason to explore that avenue again.

[NonnieJ]

My Ferritin levels were just 8 last year. I definitely felt a difference after an infusion. But there were also other factors involved @ the time.

[Joolsg]

The evidence from the US is that 60% will experience dramatic improvement after iron infusion, 20% a slight improvement and 20% zero change.I had an infusion in 2019 and my ferritin was 785. They'd never seen such a dramatic change in levels. However, it did nothing for my RLS. I'm clearly in the bottom 20%.

Results can take several months to show but if you can't see any difference I suspect you're also in the unresponsive group.

[Jademarie1 in reply to Joolsg]

I just got my blood drawn today to see what it is. I know iron infusions don’t necessarily help with brain iron but I typically run a little low on ferritin/iron. I too suspect I was just u responsive to it. Thank you for your reply

[Graham3196]

According to Johns Hopkins via doctor Buchfuhrer you need to raise your ferritin to about 350 in order to test whether your RLS is going to respond to an intravenous infusion ( IV) or not.

My daughter had medium RLS so she had an iron measurement which showed she was anemic. She had an IV. Ferritin went up and she has not had a recurrence of RLS in the last three years. Pretty good for her, so test increasing ferritin fully before you give up. As far as I have been able to find out the only test is to raise your ferritin to at least 350 and see what happens in the following 12 weeks. In some places you will meet many doctors who think they know better and will not cooperate with an IV. Find another doctor until you succeed. After years I have now been seeing a specialist in intolerances and allergies. He has adopted the old fashioned approach of going on an elimination diet and then reintroducing different foods in some systematic order to detect intolerances. There might be a more modern approach but I will stick to this proven method.

So far I have found I am allergic to Birch trees. Interesting but so far not much help for the RLS. I haven't eaten a single birch tree since, just in case.

Two things to do before you start any drugs. Get your ferritin up to greater than 350 and get a thorough test for allergies and intolerances. I am intolerant of lactose, caffiene, most alcohol and gluten.

Some of these have valid tests that could save a lot of time. A few tears ago there were many people expressing doubts about some of these tests. There may be more accurate tests available "these days" I would be interested to hear of any modern reliable tests.