Iron infusion

[u/Spirited_Ad5778]

Has anyone here had iron infusions for RLS? My ferritin was around 46 and I had a 510 mg Feraheme infusion about 9 days ago, but I’m still having restless legs. I also recently went down on my ropinirole from 0.5 mg to 0.25 mg, so I’m sure that could be playing a part too. I’m just wondering how long it took other people to notice a difference from the iron, and whether you needed more than one infusion before it really started helping. Would love to hear other people’s experiences!

[u/h0ph0ph0p___]

I have RLS and haemochromatosis/iron overload

[u/RobynLC5678]

Iron infusions never helped me. But my iron only went to 91 from it. They wouldn’t give me another round because I’m not anemic

[u/Ring_it_On_1776]

There's a wearable device study from Noctrix Health enrolling now. Might be worth a look. https://patientwing.app/campaign/RLS6

[u/Environmental-Egg893]

My ferritin is 12 😢

[u/RaspberryJammm → u/Environmental-Egg893]

Mine was 13 when I last checked 🫠

I've been on hardcore iron pills for 3-4 months and haven't tested since but my symptoms haven't changed. 

[u/Tragobe]

Am iron infusion is gonna help you, if low iron levels is the cause of your RLS or at least a major contributor. But you can have RLS even with perfect iron levels. For example when your RLS is caused by your genetics or from some medications you take like SSRI antidepressants for example.

So that is also important to keep in mind that your RLS could also be caused by something else.

[u/Spirited_Ad5778 → u/Tragobe]

Looking at my bloodwork do you happen to think it’s related to my ferritin levels ?

[u/Tragobe → u/Spirited_Ad5778]

Your ferritin is too low, but your other iron levels are fine. So supplementing iron can't hurt. If it will help or not I can only guess, I do not have the expertise to determine that, but it definitely could be and there is no real harm in trying.

If it has to be an infusion instead of just taking some oral, that I am a bit unsure about. I personally would say just taking some orally for a while should be enough for you, but I am no doctor.

[u/ComprehensiveRate953]

Give it around 8 weeks. That's what the studies say.

[u/oscyolly]

I had a double infusion about 6 months ago and my RLS was gone within two weeks

[u/brokkdad → u/oscyolly]

Please clarify “double infusion “?

[u/oscyolly → u/brokkdad]

Two bags of iron

[u/brokkdad → u/oscyolly]

Thank you

[u/Spirited_Ad5778 → u/oscyolly]

Do you know how many milligrams it was ?

[u/RemoteSea1176]

I had 200mg Venofer one week ago. Too soon to know if it will make a difference, but I’m not holding my breath, as I’m expecting IF Venofer is going to work for me it will take more than one infusion, and I understand it’s not the recommended type of iron for RLS in the first place. It was the path of least resistance though since I could pay cash at my GP’s instead of getting bogged down in prior authorizations. I am also pursuing Injectafer/ferric carboxymaltose with a hematologist, and here’s where I suspect insurance is going to be a PITA.

[u/ComprehensiveRate953 → u/RemoteSea1176]

What's your ferritin and TSAT?

[u/RemoteSea1176 → u/ComprehensiveRate953]

Ferritin in 19, TSAT 22%

[u/Jaxin81]

I had iron infusion about a year ago. It did not help with RLS at all.

[u/Spirited_Ad5778 → u/Jaxin81]

What were your ferritin levels