Iron Infusions: At long last I had a... - Restless Legs Syn...

Restless Legs Syndrome

15,367 members9,758 posts

Iron Infusions

bedith6
bedith6

At long last I had a phone call from my G.P. re. iron infusions. She had promised to request this from the haematology dept of the local hospital. However when she phoned me she said she hadn't yet heard from them although she did admit to being very late sending the letter to them. She doesn't think they will allow it as my iron levels are"normal 64". in the meantime she wants me to try Pregalabin. Well I've tried everything else with no results or awful side effects so I'm a bit worried about accepting. Has anyone else tries this drug and did it work and were there side effects? Also what of augmentation does anyone know?

10 Replies
oldestnewest

I am on Pregablin extended release as well as Tramadol’ extended release. I’ve tried all the ghastly DAs. So far there are no side effects apart from a bit of daytime sleepiness. It’s working pretty well but early days.

rsears57
rsears57 in reply to macewan13

What are DAs

Dopamine Agonists. The most commonly prescribed are mirapexin (aka pramipexole or siffrol), ropinerole (aka requip), and rotigotins (a patch aka neupro).

Thank you

What country do you live in?

bedith6
bedith6 in reply to Graham3196

Hi Graham I am in the U.K.

Graham3196
Graham3196 in reply to bedith6

I have seen two places in the UK that have provided iron infusion for RLS. I presume that the person who originally posted them on our public forum is happy for them to be repeated.

1 Sleekat about 17Aug18

" I live in Hampshire & had iron infusion in Winchester Hospital.

2 Boo-boo in reply to Pippins2 about 17Aug18

Hi Pippins.....the neurologist is Dr Sarah Jackson, Royal Devon & Exeter Hospital. In August last year my ferritin score was 43; I raised it to 59 at the end of November by taking iron bisglycinate. Post the infusion in January it went to 435 and last month it was 155.

Perhaps anyone else who has found places that will perform iron infusion for RLS (as opposed to for anemia) could reply so we have a list of places where it is possible.

I remember someone in Queensland had it done but I can't find the details

Cheers

Graham

That’s a brilliant suggestion, Graham. I would love to know of other locations. Would consider traveling to get an iron infusion.

First, I live in Africa, so no specific help from the other side of the planet.

But people overblow the difficulties and dangers of iron infusions. It is a simple drip, any GP or nurse should be able to administer them, and they certainly have the knowledge to know that on exceptionally rare occasions there might be a problem - in which case they will be ready and able to intervene.

My GP was happy to give me a series of infusions in his rooms.

He and his nurse watched me like mother-hens for half an hour, declared 'You won't die today', and left me to snooze with the interruptions of cups of tea to keep my fluid levels up. It was altogether rather a pleasant holiday.

I had to pay for the ampoules out of dwindling savings, but so what? It is a question of priorities, anything to ameliorate this condition is worth trying.

I would suggest you show evidence-based information to your doctor, ask him to put you on oral iron supplementation, or declare that you will do it yourself (and keep a record), and see if you can claw your way much above your present level. It will be difficult.

If he knows that 100 is the minimum for RLA sufferers, and he sees that oral supplements will not get you much further over three months or so, then he might be convinced by the science.

So here is the science, one of the most interesting bits of which is that the 'normal' levels were set in a very non-scientific -thumb-suck sort of way. Take screen-shots along the way, print them out, and take them to your GP. Tell him that in Africa doctors do not deem it essential to call in Haematologists. Or at least mine does not.

youtube.com/watch?v=VVlQKOO...

Graham3196
Graham3196 in reply to Parminter

Thanks for that presentation. I'll take it along to the sleep specialist at Monash and see if he already knows about such things or is willing to learn

You may also like...