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?
Iron Infusions: At long last I had a... - Restless Legs Syn...
Restless Legs Syndrome
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.
What country do you live in?
Hi Graham I am in the U.K.
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
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.
Not what you're looking for?
You may also like...
remember me, the one trying to get off of ropinerole because, in addition to augmentation issues,...
Hopkins did, they gave iron intravenously usually about 2 or 3 or 4 series of infusions of this...
In November I had an iron infusion with the aim of raising my ferritin from 105 to 350. A blood...
have finally achieved an iron infusion. All the fuss just for one gram of iron in the right...
is, not only losing its effect but it is also giving me the same side effects. The constipation is...