Iron Infusion

[Ikeeptrying]

I've had 4 iron infusions and no RLS. It's a miracle. Long may it last. It may work for some of you. Give it a try.

Marilyn

[Joolsg]

I'm so pleased for you Marilyn. That is wonderful news. Thanks for sharing - it's so lovely to hear good news.

Sleep well,

Take care

Jools

[Graham3196]

Hi Marilyn That's great news.

Do you know what your serum ferritin level was before and after the infusions? How long between the four infusions? Was relief achieved after the first infusion?

Was it covered by your health insurer?

You give us all hope!

Graham

[Ikeeptrying in reply to Graham3196]

Numbers are in response to Parminter. I received infusions once a week. Did not get relief after the first infusion. I'm in Kaiser and they covered it. Sorry I'm not explaining more. I'm sick from an unrelated problem. Good luck to all.

[Parminter]

How very excellent.

Marilyn, can you give us the specifics? What sort of iron, and how much?

And, as Graham asks, what were your ferritin levels before and after - about two weeks after, I would think.

Just bear in mind that our brains gobble-disappear-nuke iron, so when symptoms return in three or six or twelve or eighteen months go back for a ferritin test and more iron.

[Ikeeptrying in reply to Parminter]

I don't know what sort of iron. I received 4 packets of iron. March 15 ferritin level was 53 ng/mL. June 21 it was 636 ng/mL. I know it sounds crazy but these are the numbers the lab gave me. I go back in 3 months for another ferritin level test.

[Parminter in reply to Ikeeptrying]

No, not crazy.

If you were given the infusions by a specialist, it was possibly ferric carboxymaltose 1000, which is the Rolls Royce of infusions.

I had the Volkswagen version in half that dose and went from 20 to 250.

I want what you've got!

Well done you!

Long may it last. It won't last forever, but you know it works, for the next time.

[Svengolly in reply to Ikeeptrying]

Can u share .. what kind of dr ordered the infusion ? Also city ?

[Ikeeptrying in reply to Svengolly]

My primary care provider ordered it. I'm in Folsom. CA. Going back next week to have iron levels checked.

[Svengolly in reply to Ikeeptrying]

Wow that is one awesome gp then !

Even amongst "specialists" ignorance abounds :(((

[Ikeeptrying in reply to Svengolly]

She is great. I'm lucky to have her. I doubt my neuro would have ordered the infusions. She really tries to help me.

[DicCarlson]

Also if RLS is under control - do you sleep normally?

[Ikeeptrying in reply to DicCarlson]

Yes, I sleep great.

[Ikeeptrying]

correction. I had 5 infusions of about 5 - 10 milliliters. Sorry for the mistake. My husband just told me, I should have asked more questions when i received these infusions. important thins is that they worked.

[Parminter]

They usually give them 200 mcg (?) at a time, so that would be 1000 total.

[Billdel]

Hey Marilyn. That is great. I had 2, 7 days apart in early April and doing well. Have a minor problem occasionally. Going back to Clinic in 2 weeks to find out if and when I should get another one. How long in between your infusions?

Hope it continues well for you.

Bill

[Ikeeptrying in reply to Billdel]

One week between infusions.

[Billdel]

You had all 4 infusions sequentially every 7 days? Wow. Thanks for the information.

[99selkies]

Are you in the States as I don't think these infusions are readily available in the UK

At least my GP tells me they are not

Any one out there from UK who can give me info on the UK position

Thank you

[Ikeeptrying in reply to 99selkies]

Yes, I'm in California. I'm surprised they don't have iron infusions in the UK. Sorry, maybe someone else can help.

[Hidden in reply to 99selkies]

Your GP is right, for some reason iron infusions are not really given for RLS here in the UK. Could be that they can be risky to do.

[Svengolly]

The test dose and the slow infusion rate are both done to prevent complications. The test dose is also important if you have a history of multiple drug allergies. Your doctor will use the test dose to monitor you for any reactions.