Restless Legs Syndrome (RLS) Discussion Board

After having two infusions of iron, the last occurring two weeks ago, i am still having RLS symptoms every evening sometimes lasting through the night. Does anyone have any experience with IV Iron and if so, how long does it take to determine if the treatments were successful to slow or alleviate symptoms?

it takes about a month for IV iron to show it affects. Occasionally it can take 2 months. I've had 3 sets (6 IVs) and mine tooke 3-5 weeks for RLS symptoms to improove.

Thank you so much for your response. I realized too late that I posted my question in the wrong category so I am happy to receive your reply. It sounds as if your symptoms did improve but not totally go away. If I may ask, how long did your improvement last or how long since your last treatment?

Goldielocks

All urge-to-move symptoms resolved, energy improved, sleep improved but still not normal. Sense of well-being imporved. First set lased 7 months. 2nd set lasted 10 months. I am now 15 months into my 3rd set. Sometimes I think urge to move is coming back, but I'm still not sure. 15 months is longer than usual for people getting IV iron.

This is very encouraging to me as I am almost desperate for relief. I am sincerely grateful for your reply to my question. Thank you and may God heal each of us according to His perfect will.

Goldielocks

Goldielocks wrote: ↑

Mon Sep 20, 2021 1:20 am

... may God heal each of us according to His perfect will.

Goldielocks

Amen

Can any one tell me how well taking iron pills for ferritin iron works and how well it is

Oral iron works for RLS basically only for those whose iron is so low they have iron deficiency anemia, mostly those with a ferritin less than 20. The problem is that RLS is caused by BID (Brain Iron Deficiecy). The reason we don't have enough brain iron is unknown, but thought to be due to inadequate transport of the iron in the blood into the brain caused by a problem in the blood-brain barrier. To overcome the iron transport problem RLS patients need a ferritin much greater than 100 (probably at least 250, the exact level is unknown, and varies from patient to patient).

Ah, you say, "why not just take a bunch of oral iron." Reasonable thought, however, high levels of iron (ferritin over 1000) is very dangerous, and your body has lots of protection from too much iron. There is a hormone (hepcidin) in the intestine of humans that regulates how much iron is absorbed from the intestine. It basically shuts down iron transport from the partially digested food and iron in the intestine if the blood ferritin is much over 100 (varies from patient to patient) to the blood. So it is nearly impossible to get your blood ferritin much over 100 using oral iron.