Iron Infusions for RLS

[Joolsg]

Another research paper showing iron infusions of Ferric Carboxymaltose improves RLS.

We now have the uphill battle of convincing our GPs and neurologists.

If you are trying to persuade your medical team to follow the Mayo Clinic Algorithm and increase serum ferritin as first line treatment for RLS, or to help your RLS symptoms, this paper may help.

sciencedirect.com/science/a...

Good luck.

[Kakally]

great next stage research by Chris Earley. Thanks very much Joolsg 👍

[WideBody]

Yet we still get messages every day from people proscribed DA drugs that have never done a morning fasted full iron panel.

While the medical profession can do some amazing things, the pharmaceutical companies have too much influence.

Thanks Joolsg.

[Joolsg in reply to WideBody]

I completely agree! In the UK there are only one or two doctors who will prescribe iron infusions as first line treatment.We have a long, long way to go before GPs stop prescribing dopamine agonists and treat patients correctly.

[Felixstowe]

thanks Joolsg. I’m very lucky that the Consultant in the sleep clinic I attend has no problem with iron infusions especially if you have problems taking iron tablets (I do).

One day we hope Doctors will actually educate themselves or be educated in the absolute misery or RLS.

[Joolsg in reply to Felixstowe]

It's my main mission in life. It's not difficult. I understand GPs cannot be fully informed in Multiple Sclerosis, because that's a far more difficult area. But RLS can be fully learned by a GP in around 4 or 5 hours. The basics can be taught in under 2 hours. The economic savings in doctors' appointments, NHS time, tests, medications, time off work would be ENORMOUS. Untreated RLS causes co morbidity and that could all be prevented.'No brainer' as our friends over the pond say.

[Oscarcat63]

That's for IDA , and had only 18 participants with 8 on the placebo...I can't access the full article though.

However, even if I could, the study size is way too small to be conclusive.

But it seems that iron supplements may help some people, at least from posts on this forum

[Edengirl58]

I was lucky to hand an iron infusion as first line treatment, prescribed by neurologists at Newcastle Hospitals Foundation Trust (UK). Also put me on very low dose Gabapentin. (The infusion kicked in after 7 weeks and I was totally free of RLS for a month. Then it started again gradually. I have arranged an appointment for a full iron panel at my GP surgery to see if I need another infusion, or possibly some gentle iron.)

However the neurologists were trying to assure me that, if needed, there was no problem with dopamine agonists! I was so grateful to have been informed to the contrary by everyone on this site, and had printed off the Mayo Algorithm to take with me. On a follow up appointment another neurologist suggested Melatonin to help regulate my sleep- which made my RLS worse- and when I checked it was listed under the side effects 😫

A big thank you to all contributors for advice, and peer support with this horrible condition.

[TheDoDahMan in reply to Edengirl58]

After 7 weeks it kicked in and then only for a month? How long have infusions usually lasted for others?