Why does the majority on here feel getting an iron infusion is horrible??? Have you ever had one??? I have and they are not bad!!!

[Susansam-99]

I have had RLS for years and I get my ferretin levels checked every 3 months. Getting an iron infusion will not cure RLS, it will however lesson the symptoms. Keeping the level above 80 is recommended. Some people can’t absorb iron in their diets and need to get it through an infusion. They still have no idea why my levels drop, but they do and iron is a must, so what’s wrong with an infusion? It takes about a hour and I have always walked out and drove myself home, never having an issue for over 10 years now. I wear a 24 hour patch for my RLS called Neupro (rotigotine transdermal system). Works great!! It’s one thing if you had a bad reaction from an infusion, but u shouldn’t be here scaring those who could benefit from an infusion if you never had an iron infusion!! Not everyone can absorb iron the way the body needs it and it’s not right to scare a person away from something that can help them. Iron infusions DO NOT CURE RLS!! They will make you feel much better because you need iron, iron is not an option!!!

[SueJohnson]

Actually one wants iron to be above 100 or more and it helps 60% of people with RLS and for some it completely eliminates their symptoms.

[Madlegs1]

I'm not sure what you are reffering to, but iron infusions can be dangerous for some people, and have to be prescribed.

Many people post their experiences here, which is perfectly valid. That is what community is all sbout.

Thanks for bringing up the point.

Cheers.

[CsiguZ]

I had few iron infusions with no side effects, but unfortunately had not lessen my RLS symptoms. BTW in my case iron is not absorbing from the diet because I have inflamed duodenum (the first section of small intestine) where iron should absorb into the bloodstream. This inflamation is very likely because of a long term bacterial infection in my small intestine. I think most of us with low iron has an inflamed duodenum.

[SueJohnson in reply to CsiguZ]

What was your ferritin after the infusions?

[CsiguZ in reply to SueJohnson]

My ferritin was 251 in April just after four IV iron and was 154 a week ago.

[Butterflysun1]

I think the point is that if oral will raise it enough to be effective then that’s the best & safest way to go. If not the risks ( of being one of the relatively rare but not unheard of people who get an allergic reaction to it ) and benefits ( of being one of the 60% of RLS sufferers who benefit but will need it regularly ) of IV have to be weighed up. It’s a bit of a nuisance having to go for IV regularly & someone has to agree to give it to you for what is a unlicensed indication ( as my haematologist recently pointed out & refused to agree to it).

[Joolsg]

I haven't seen many negative reports about iron infusions. The Mayo algorithm mentions them.

If they're helping you, and your doctor will prescribe them I'm delighted for you.

Do be careful though as you augmented on the max dose of Ropinirole and you're now on the patch so any increase in severity of your RLS is now more likely to be from the dopamine agonist patch.

You might be someone who could be free of meds if you tapered down from the patch and then you'd probably only need one iron infusion a year.

[Lednuz]

I agree, having iron infusions is no different from any other infusion (except for the colour of the bag!)