Another study shows that iron improves RLS.
We cannot access the full article, but the evidence is mounting. There are now many trials proving that iron treatment helps RLS.
If your doctor is still refusing to take full iron panel blood tests, please refer them to the Mayo Clinic Algorithm and the latest research. And consider legal action.
Might be worth purchasing
I have so many other studies in my file that I'm not going to spend money. But the evidence is mounting up that iron treatment should be first line treatment everywhere.
I thought it might be particularly interesting in that it compares efficacy and speed of reponse to oral Ferrous Sulfate 325mg taken twice a day compared with two doses of 510 mg spaced 2 to 7 days apart IV Ferumoxytol (supplied by study sponsor Auerbach Hematology Oncology Associates).
Certain consultants in the UK seem to need convincing of the safety and efficacy of IV iron treatment!
Since I haven't read it I don't know what it says but I do know one should not take iron twice a day and that it is better absorbed taking it every other day than even once a day.
Yes, I've not seen the final study either, and was surprised by the twice a day element but that's what it says in the overview:
"Ferrous Sulfate 325mg (oral) tabs morning and evening"
Why Michael Auerbach went that way? I know that he seems pretty keen on the case for IV iron, and that he did a webinar on Iron Infusion 101 for the RLS Foundation...
Joolsg - Thanks for sharing this. I haven’t read the study (and must shortly rush out the door to an appointment), but I’m assuming that iron is only recommended in cases where serum ferritin is lower than . . . I forget the units involved, but 100 “units” sticks in my mind?
The reason I bring this up is that I would phrase it more like, “possible iron deficiency relevant to certain markers should be looked at as a first-line strategy, since low levels suggest iron supplementation as a non-drug intervention with high rate of success & minimal side effects” - or whatever the best language would be.
Me, my serum ferritin has always measured as well above the critical range, so I’ve never been able to try iron injections. Wish it were otherwise. So though it’s an excellent strategy that should be assessed straight away in case presentation, it won’t help everyone. Do you know if there is any estimate on the percentage of folks with RLS who do qualify for trying iron, versus the percentage of folks like me who don’t qualify?
Randy
Sadly no definitive answer. I do know that the US experts often say 60% RLS patients dramatically improve with iron infusions. I have no idea where that figure comes from. I can't find it in the study papers I have.However, my serum ferritin was 145ųg/L before my iron infusion at St George's, but the haematology department read all the research papers I sent over and were happy to trial an infusion.
My serum ferritin went up to 785ųg/L. The haematology dept weren't at all concerned by that high number.
However, it made zero difference to my RLS.
There are now theories amongst experts that years on any dopamine agonists causes permanent damage to dopamine receptors. We need functioning dopamine receptors to take up iron in the brain.
So, any dopamine agonist use may prevent iron infusions from working.
Also, there are clearly several distinct causes of RLS and until more research is done, it will remain a mystery why RLS patients respond differently to iron supplements/infusions.
There is clearly a genetic link but then there may be different environmental or physical triggers.
Don’t pay. If one really needs it, I can most likely get it through my institution (not at home atm). But do notice that it specifically mentions people with iron deficiency anemia, and most of us do not have that.
I did wonder about that. The study overview states that:
"Both oral and IV iron are considered standard treatments for IDA. These same treatments also reduce RLS symptoms. The treatment doses are those accepted for treatment of RLS and also appropriate for treatment for RLS-IDA. Choosing doses equivalent to those for the treatment of RLS without IDA will allow a comparison with that literature."
70 patients double blind study with marked improvement in RLS symptom and yet only conditional for in the AASM draft.
Thanks very much for posting this & sparking such a helpful discussion: it’s all exactly what I need right now: because have been wondering how hopefully I could dare be when i have my first NHS Iron Infusion after Easter
First some background:
Been suspecting I have had mild restless legs syndrome all my 70 years - secondary to infant onset lupus (with the usual secondaries inc Sjogrens, peripheral & small vessel vasculitis) + Primary Immunodeficiency Disease + spina bifida occulta + hEDS (especially severely affecting whole spine: facet joint syndrome responded pos to various body therapies + decades of periodic bilateral cervical & lumbar radiofrequency ablations, but negatively to all pharmaceuticals). My RLS-type manifestations have been termed myclonic jerks & then clonus by my rheumatologist, but now my consultants are calling them RLS too. I’ve never been specifically treated for these RLS-like signs & symptoms, but I am benefitting a lot from heavy duty combined therapy pharmaceuticals for all my immune dysfunction illnesses. Over the decades have proven to respond very negatively to all classes of analgesics except paracetamol & ibuprofen gel.
More recently NHS neurosurgery’s L.4/5 instrumented fusion went wrong in 2019 greatly increasing my degree of lumbo sacral scoliosis curve & rotations, my RLS-like manifestations have increased greatly alongside those of my peripheral neuropathy & also the L4/5 nerve root entrapments. And then last Sept I had a big emergency bowel resection…followed at Christmas by a nhs fast-track referral to urgent gastroscopy re suspected oesophageal cancer. Alongside all that, my RLS-like manifestations have become so severe that I’m managing them 24/7, and since the emergency bowel resection , every night am having to get out of bed & go downstairs for 2-3 hours settling things down. I’ve been prescribed pregabelin & have a box here, but my docs & I agreed am so hypersensitive to meds generally that it’d be best not to trial pregab until we’d figured out what pharma can help my oesophagus
Anyway, putting me on that 2 week waiting cancer pathway, my GP ran a series of blood tests including those for anemia & iron deficiency blood tests - I’ve a history of border line results across the board. Well, all my anaemia, iron etc results are now officially deemed significant enough for my GP to alert my gastroenterologist who immediately referred me for IV iron. I suspect all my docs think they had to resort to IV iron because gastroscopy found widespread oesophageal ulceration with heavy bleeding throughout. …and, earlier in my life, oral iron meds aggravated my chronic mouth to exit GI tract conditions.
So, here I am, hoping against hope the iron infusion may calm down my RLS-like manifestations…& feeling very much in need of the caution being expressed in this wonderful discussion & the study you’ve posted about. I’ve had so many disappointments re treatments for all my ‘stuff’ over the years, but I’ve also had miraculously positive results, so…am trying not to overthink what iron infusion might do for me…and am very much hoping it’s sideffects won’t aggravate me the way so many treatments have during trial periods
Apologies for this long reply, and thanks too because trying to articulate this helps me: & if you have a mo, Hope you’ll let me know even briefly if I’m making sense at all?! For sure I’m a complex case, even more so now I’m 70 and under nhs Palliative Care. So am totally not expecting an ‘answer to everything’ 😉
I suggest you make a new post setting out all your history. Copy and paste it all. Then other members can see and advise you.No one will see your reply otherwise.
You are a classic case of RLS. Your auto immune disease, spinal issues and gut issues mean you will be a prime candidate for RLS!!
Yes, an IV iron infusion will probably help enormously.
You may also need medication, but I see you are sensitive to meds.
Most gastric meds to resolve gut issues can be detrimental for RLS, because they stop iron absorption. So getting the iron infusion should help.
Any operation usually involves an anti emetic as part of the anaesthesia, and they usually worsen RLS. The safe anti nausea med is Zofran.
Pregabalin is first line treatment, but I suggest you wait until after your infusion. It may resolve the RLS completely.
If not, you can start the pregabalin slowly, at night, to see if it helps.
thanks v much: every comment helps a lot!
You’re right: am hypersensitive to virtually everything in life 🙄 - especially pharma…when a med suits me I do GREAT, when it doesn’t suit me, life is hell. any mention of antiemetics makes me shudder: they are all documented in my hospitals’ health summaries, so surgical teams avoid them for me. I have had such bad reactions to many inc ondansetron (Zofran)
However, am not afraid of trialing pharma, eg the upper GI surgeon & i agreed to try high dose long term pantoprazole for the ulcerated bleeding oesophagus + long oesophageal stricture etc & my reaction this time round isn’t as dreadful as previously to various PPIs inc pantoprazole, plus it is helping a lot
ASAP will follow your advice to post here
Hello, i want to try iron infusion for rls but my doctor does not want to give it to me, he is afraid of an overdose. He told me if i show him some medical studies, he will discuss it with other doctors.Please someone can link there some good studies with using IV iron.
My s. feritine is 80ug/l. I seen study, that if someone have feritine under 300ug/l and have more than 50Kg is recomended 1000mg iron pump, safe is going to max 500mg/l feritine, but now i cant find that study for my doctor.
Or is posible to extract iron from tablets and make liquid for injection?
sciencedirect.com/science/a...
Sorry for delay responding. I've been on a short holiday/break.
The above study will hopefully persuade your doctor that iv iron infusions will help your RLS. If Cochrane says iron infusions show moderate improvement, that actually means they show GOOD improvement, as they are extremely conservative.
Iron infusions will help around 60%, but 40% show no improvement.
You cannot crush iron pills and inject them. That WOULD probably kill you!
What medications are you taking now?
I find this study with iron supply from year 2017 and this result is not very good cochranelibrary.com/cdsr/do...
I used 45mg oral iron for 3 months and it dont help me :/ if i try using 150mg iron per day, i need only control feritin to dont go over 500ug/l for dont overdose, or i need control something else parameters? Sorry for my english 
Edit: now i read, that if i have normal value of feritine in blood, in oral used iron is absorbability only 1-2%, in injection it is 100%...
Normal people iron vs RLS iron levels
RLS and Iron
Hepcidin as biomarker for RLS - study
IV Iron Infusion for RLS
