Ferric Carboxymaltose Iron Studies 2025

[Joolsg]

acrobat.adobe.com/id/urn:aa...

A comprehensive analysis of previous intravenous Iron studies confirms that they improve IRLSS scores but not necessarily quality of life.

We know that iron Therapy, preferably a quick iron infusion, should be first line therapy.

I wonder how many people did NOT benefit from infusions because they had been prescribed dopamine agonists first? Experts think damage can prevent iron infusions working.

[WideBody]

When my supposed Neurologist quadrupled my Ropinerole prescription. I looked him right in the eye and said. Isn't there anything else we are missing? You know I was diagnosed anemic.

I was told Ropinerole was my only hope. That was the beginning of a very stupid and dark period of my life.

I have some thoughts, but it's best not to share them publicly.

Step one is a morning fasted full iron panel for ANYONE who thinks they may have RLS. Getting iron stabilized first is a priority. No other medication will help if Ferritin is a 7.

[Joolsg in reply to WideBody]

It's a worldwide medical scandal.So many people could have been saved from dopamine agonists & augmentation & hellish withdrawal if Doctors studied RLS in detail.

Iron therapy was first given successfully for RLS in 1953!!!

I know iron infusions used to be dangerous in the past BUT the newer formulations are safe. So they stopped infusions and completely lost/forgot the knowledge that iron infusions could help a majority of patients.

All we can do is keep raising awareness in the media and try to educate our ignorant doctors.

[WideBody in reply to Joolsg]

1953.... just a few years before I was born. I have the entire study.

Thanks to pharmaceuticals, we took a huge step backwards.

doi.org/10.1111/j.0954-6820.1953.tb07042.x

FYI, Sir Thomas Willis of Willis-Ekbom fame was the first to mention using laudanum (a tincture of opium) as an effective treatment.

Therapy in RLS, 1953

[Joolsg in reply to WideBody]

Yep. I posted the insignia badge of the Neurology section of the Royal Academy of Medicine. It has Thomas Willlis portrait!! And yet UK neurologists aren't taught it.Meanwhile the medical negligence and ignorance continues. Here in the UK the doctors are STILL prescribing DAs without blood tests or replacing common trigger meds.

[SueJohnson in reply to WideBody]

My laugh for the day I have some thoughts, but it's best not to share them publicly.🤣🤣🤣

[Oscarcat63 in reply to WideBody]

I have, let us say, some VERY ungenerous thoughts about rls treatment.If the prescribers of DAs were to be uh, Transported To Neverending Twitching Hell, I'd like to put them there, along with everlasting, unremitting urges to by crappy goods from Temu - whilst walking in a sleep-deprived haze.

But I don't approve of torture.

Pity they didn't

(Disclaimer: In reality I'd give them 'just' 30 minutes. Lol)

But I do know how you feel

[WideBody in reply to Oscarcat63]

I honestly blame the damages directly on the DA drugs. I can't believe it. I feel like a section of my life is missing. Yet, I lived through it.

The damages done by DA drugs is horrific. Yes, I know they have helped a lot of people. I am concerned they caused horrific damage in way too many people.

[Joolsg in reply to WideBody]

Totally agree. I know of one poor lady who died of a head bleed trying to walk off augmentation. Her useless neurologist told her family there was nothing he could do!And so many are left with severe depression and anxiety.

Dr Berkowski told me one of his patients died by suicide. He had anhedonia. A complete inability to experience pleasure in ANYTHING.

[SueJohnson in reply to Oscarcat63]

My laugh for the day Transported To Neverending Twitching Hell along with everlasting, unremitting urges to by crappy goods from Temu 🤣🤣🤣

[Kakally]

Dear Joolsg,

I’m having trouble opening the link. Are you able to give the direct link, not via Adobe

Thanks if so 🥰

[Joolsg in reply to Kakally]

I've added a screenshot to see if it helps. The link is only available via Adobe.

[Kakally in reply to Joolsg]

Thanks

[WideBody]

I can't access the link. Got any different links?

[Joolsg in reply to WideBody]

See response to kakally.

[Joolsg]

Apologies everyone. It's only available via Adobe.I've taken a screenshot so you can try to access it differently.

[WideBody]

We got you. frontiersin.org/journals/ne...

All I usually need is the DOI number.

[Whippetmama]

Adobe Acrobat Reader is a free app. You can download it from either the Playstore or from a link on the Adobe site. It's 100% safe. Been around forever.

[Purpleyam]

I had iron therapy through infusion last July. My score was great - 280, however I didn't see any lessening of my RLS. Yes I had been on DAs for 14 years.

[Joolsg in reply to Purpleyam]

I suspect at least half the people who get iron infusions fail because of prior DA exposure.

[SueJohnson in reply to Purpleyam]

And not everyone improves by raising their ferritin.

[Joolsg in reply to SueJohnson]

Indeed.

[MrCrow]

It says that the content has been unshared. I was wondering if this is worth a shot of ferritin it as 115.

[Joolsg in reply to MrCrow]

If you can afford/arrange an iv iron infusion of ferric carboxymaltose- then try it.Many people need serum ferritin above 200ųg, often 300ųg/L before they see improvement.