Can it take up to 3 months to feel benefit of iron infusion?

[oceanred]

Hi. After noticing my RLS symptoms were getting worse, I had my ferritin checked and found that it was only 5, so this led to me having an iron infusion 3 weeks ago. I had my ferritin checked again 2 weeks after the infusion, and found out yesterday that my ferritin has now risen to 363. However, this is good and bad, because although my ferritin level is now high, my RLS symptoms have become worse in the last week. My only hope is that my GP said that even though my ferritin levels will be high straight after an iron infusion, it can take up to 3 months to feel the benefits because the iron needs to filter through the body. I really hope this is true because otherwise, my theory that my RLS could be because of low iron is out of the window. It's even more frustrating because until last week, it felt like my RLS was really improving.

[Madlegs1]

RLS due to iron levels, seems to apply to only about 50% of sufferers.Hopefully you are within that cohort.

I am not, unfortunately,-- my ferritin was over 1400 at one time, with no effect on RLS levels.🙄😭

[oceanred]

I really hope I'm not in the 50% it doesn't help. Although my iron levels are good now, my Hb is still low at 120 and I'm reading that this could possibly affect RLS also.

[Hidden in reply to oceanred]

Iron deficiency anaemia, i.e. low haemoglobin is a cause of so called "secondary" RLS. However, if you already have (Primary) RLS then the anaemia will make things worse.

Furthermore, you can't hope to treat your RLS with iron therapy until you have raised your Hb level to normal. Any iron you take will be diverted to raising your Hb preferentially. This means there is little chance of raising ferritin levels or correcting Brain Iron Deficiency.

Hence, it is important to continue any iron therapy you're taking in order to correct the anaemia. Once that's corrected then it can work for your RLS.

Obviously then, it's going to take significantly longer.

If despite having had an iron infusion, your Hb is low, this needs to be investigated, why is it still low?

[Joolsg]

I've read reports that it can take up to 6 months for any positive effects to happen. However, as Madlegs states, not everyone responds to iron.Dr. Buchfuhrer and Dr. Winkelman ( top US experts)stated in a webinar that 60% show dramatic improvement, 20% some improvement and 20% will not have any improvement. I'm one of them. After my infusion in 2019, my ferritin was 785 and then it dropped to 460 and now in the 300's. Sadly I'm in the 20% that have no improvement.

Fingers crossed it kicks in.

[oceanred]

I had iron infusion a few months ago and my RLS was ok for a while, about 5-6 weeks after the infusion. But I'm anaemic so iron levels dropped right down again after a couple of months. Symptoms went worse again, so it's either because iron dropped or simply because RLS gets worse over time. I'm going on holiday to Poland in 10 days and I'm dreading the effect that this new condition is going to have on me whilst I'm there.

[Mariuanna]

Try not to have artificial sweetener in anything... Keep your legs always cool heat triggers mine. 1 small glass of tonic water in the evening may help x