I finally got my iron infusion (yay!) but it hasn't "kicked in" yet. No pun intended. Last night I had one of my worst yet. Zero sleep and threw up water & zofran all night. When I had my infusions in 2020 I was fresh out of COVID hospital and quite ill with pleural effusions... plus having been on a machine to breathe. Back then I had iron infusions for low hemoglobin (not RLS) and was so sick I didn't notice how long took to work for RLS symptoms. My ferritin was 13 last week but I was also reading that you get a false reading if you have chronic inflammation ( I have Lupus) so iron levels are lower than shows on test. Which would be consistent with my symptoms. I have angular cheilitis, crave ice & dirt, etc.... So is my iron just too low to notice a diff with 1 infusion? Or will it just take a few days to absorb ? I was pinning all my hopes on getting relief from the infusion. I fought real hard to even get it! Lemme know how long it takes for you guys. 😭💔
Infusion how long to "kick in"? Hehe. - Restless Legs Syn...
Infusion how long to "kick in"? Hehe.
It can take up to 8 weeks to raise your ferritin and 1 infusion may not raise your ferritin over 100 since it is so low. Have another test of your ferritin after 8 weeks.
Thank you as always for your kind support and detailed knowledge. My doctor just prescribed Baclofen 10mg twice per day and it seems to help reduce the spasms. I am surprised I haven't heard of it before. I gather it is and anti-spasmodic useful for people suffering from MS. Do you know anything about using this medication for RLS? I am hoping it will help me get off the dreaded Pramipexole.
I have heard of it being used for PLMD but not for RLS. Do let us know if it helps.
Thx Sue 😭
Hi, can I asked if you are live in the UK please? When I asked for Iron infusion I was told you cant get it on the NHS, is this the case?
If you click on Skycop's name you will see her profile and that she's in the US. (Not everyone fully fills in their profile).
UK availability of iron infusions - and for what -varies by NHS Trust. In many Trusts it's only available for treatment of anaemia.
Have you had a full iron panel done? What were the results? Have you tried oral iron supplementation? What other medications are you on (they may trigger RLS). Some foods trigger RLS.
Check out SueJohnson 's Replies which are full of useful info on these and other areas
RLS has cost me jobs, relationships, my chance to have children, a social life.... I feel like a prisoner from 4 pm. I can't go to dinners, movies, long haul flights. My husband goes to restaurants & shows by himself. He hates it. It's lonely. I think I have probably had this for 40 years. It looks like a lot of people in this group are the same- which is sad- but it feels good to know I'm not alone. I developed Lupus in Feb 2016 and have been on hydroxychloroquine & steroids. I was told they are not triggers. Anybody on here know differently? My symptoms seemed to remain the same both pre/ post diagnosis. So the lupus meds didn't seem to make a diff. I have "ants" crawling on my feet from early evening 5-7 days/ week. Sometimes in my arms too.
So awful - I really hope that the infusion helps! (And just to clarify, my questions about iron etc and reference to Sue were for Kim2404. I know that you've been through the mill)
I realized that after I wrote it & deleted it- can't think str8- I've not been sleeping 😂
Almost 6am here and I'm still awake kickin' all night.
Hydroxychloroquine is a diuretic and can make RLS worse for many.
I'm in New York. Hard time finding a Dr who will treat RLS with infusion here too! I got one on the merit of anemia a few days ago... But she said she would only approve 2- just to get me out the the anemia range because I have pica symptoms (crumbling fingernails, hair loss, skin sores, craving ice & dirt, etc). The anemia threshold in my area seems lower than the US standard or UK. My local hospital has threshold at 6 but NIH, Mayo Clinic, etc all say 13. Frustrating they don't approve it until you get so low that you have these symptoms. Argh!
I saw Europe often has threshold at 30 which is more responsible! But of course still far from RLS therapeutic levels.
I don't know how it works abroad but the RLS Foundation gave me the US billing code for RLS iron infusion so Drs can see it can be treated with infusion on its own merit and not have to relate us to anemia standards. Hardly any Drs know this though!
Hi Sky, did the infusion help with the Pica? My understanding is the Pica goes the first day of the infusion.
Hi! Thx, yeah, my pica is much better! 
Just the RLS now. Hopefully it improves with my next session on Tuesday. Fingers crossed
💗
tell her to look up Dr. Christopher Earley at Hopkins. He is a well known RLS specialist. There are videos on you tube where he speaks about iron infusions.
I'll check out his videos & articles! I've been trying to get in to see him for about 12 years.... or anyone at the RLS clinic there but I always get these rejection emails or told over phone they aren't admitting cash pay patients or my insurance isn't accepted or not scheduling patients from outside the Baltimore area or they are full up..... There have been many excuses over the years. What confuses me about the rejection emails is they say always they are not seeing any patients with my diagnosis.... when they have a world famous RLS clinic there and even Dr Earley lists areas of interest as RLS on his Hopkins Bio page and has even published on the subject. Confusing, right? Thx for pointing me to his videos. I am keen to watch!
Attached screenshot of email saying " thank you for selecting Hopkins Medicine for your healthcare needs. At this time we are not currently seeing patients with your diagnosis. Please reach out to your local physician...."
I had heard awhile ago that they were not accepting patients from outside Maryland. Don’t know why. Also I am not sure what other conditions he may be treating that he wouldn’t be able to take anymore RLS patients.
Hi, I had an iron infusion 8 weeks ago.Like you it was for low hemaglobin. I had a full blood panel done after 5 weeks and all my levels were improved. By the way, my ferritin level was never a problem.It was 285 before the infusion.The anaemia had made my RLS much worse than usual and there has been some improvement from when it was at it's worse.This took about a month.Two months on I still have RLS symptoms.
Oh wow! So you still had symptoms with high ferritin?
It's weird your numbers are so wonky. I've only ever heard of low hemoglobin/ high ferritin in people with cancer or diseases affecting the long bones.
I hope you are ok & they solve why it's like that!
i had an iron infusion 3 months ago ( pre infusion ferritin level of 80) and it did nothing. I started seeing a functional medicine provider who thinks my level of inflammation due to consuming dairy, grains and sugar have a huge impact. She has me on the Whole 30 plan for a month. Then reintroducing foods gradually to see any effects. I read someone's post here about a month ago who mentioned that her lifetime RLS is pretty much gone after eliminating gluten, dairy, alcohol, etc. Anyone else have success with similar major dietary changes?
Sadly I didn't but I have heard of so many other people that it works for!
I tried eliminating & reintroducing so many combinations for so long.... I even tried intermittent fasting for about 10 years. ... & Lots of water fasts for up to 30 days.
Hope you're in the group it works for. Good luck ! 💗
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