Doctors please top wasting time , money and suffering…
Use iron infusions first line for those whose ferritin is = or >75ug/L (plus other parameters are ok TSATs etc
TIME because they relatively quickly find out who are the 60% ‘iron responders’. If you are one, then great, get on with iron plus any adjunctive treatment that might be required if iron doesn’t remove symptoms completely .
If a non-responder, then don’t waste time taking oral iron for years and years pointlessly.
MONEY… because iron infusions are are relatively cheap and safe, so other more expensive drugs may not be required constantly!
SUFFERING…because all these years of oral iron , other drugs. DAs and possible torturous augmentation are reduced and a more suitable treatment is found more quickly .
Yes there will always be the person whose RLS is refractory to treatment but then the secondary care doctors can really use their expertise, brains, knowledge and hearts to work out how to help these people.
WHY IS THIS SO HARD FOR THE DOCS TO UNDERSTAND ?
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Kakally
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I wonder how effective are iron infusions. I take Ferric citrate with every meal because of high phosphorus (it acts as a phosphorus binder). My Ferritin was last measured at 1019 (I take a lot of suckers), it hasn't seem to impact my RLS at all.
I think for you the story is different. There are some conditions which will mean iron infusions are not a good idea in case of the possibility of getting iron overload.
Also they are only helpful to approximately 60% of the general population anyway and there appear to be many reasons for this , most of which we do not understand.
I am very lucky to be in that ~60% who are significantly helped by iron infusions. They have made a massive improvement to my life. It is a weird lottery but certainly worth trying early on in diagnosing individual people’s RLS as infusions are relatively cheap . If they work they save time ,money and prolonged suffering . If not well then forget iron and get on with other lifestyle changes and other medications,
I wish to you well in your RLS journey and hope you are having expert and compassionate medical care🤗
I could not disagree more dear Kakally. EVERYONE who comes on here should be told that 25 to 50 mg of ferrous bisglycinate taken on an empty stomach before bed may very well obliterate all RLS symptoms for one night. It’s cheap, easy and safe for those who don’t have an iron overload condition in which case they shouldn’t get an infusion either.
Where is everyone getting that 60% figure? Here’s the quote from the 2021 Mayo Algorithm:
“The majority of the class I clinical trials for intravenous iron therapy in RLS used, however, ferric carboxymaltose.25, 26, 27 This has been shown to be effective at doses of 1000 mg administered as a single dose of 1000 mg or as 2 doses of 500 mg at 5- to 7-day intervals, but the clinical response to treatment is rarely immediate and may be delayed for 4 to 6 weeks or longer. The percentage of patients responding ranges between 37% and 59%. Intravenous ferric carboxymaltose causes hypophosphatemia in up to 39% of patients.28 The clinical significance of this finding is uncertain, but repeated use may possibly contribute to osteopenia.”
Yikes! Osteopenia? Shouldn’t we be including these facts when we so cavalierly recommend infusions? Plus, based on a 2020 article by Dr. Winkelman, he believes that the number of responders is closer to 1/3. And as you point out, “responders” also include people who get 20% relief of symptoms. Anything less than 95% means we’re not sleeping - at least that’s true for me.
For the millionth time, I believe if the regulars on here are going to quote the Mayo Algorithm then they should do so accurately and completely and as a matter of fact, why not just give people the above paragraph instead of saying 60% of people get relief. That’s completely false. Lastly, and as I always beg, why not tell people that ferrous bisglycinate can provide immediate and complete relief…for one night.
One night forever. Here’s an old post I copied regarding iron. Ignore the paragraph about chronic kidney disease:
Hi Pink, CKD is well known to trigger or worsen RLS in persons who are pre-disposed to it. The CKD makes the body think it is under attack by a foreign invader and in response it releases a hormone called Hepcidin in greater quantity than is normal. Hepcidin is our body’s iron gate keeper. It sweeps free-floating iron out of our blood stream and stores it away where the alleged foreigners can’t get at it. Every living thing loves and needs iron. So our bodies, via Hepcidin, are trying to starve out the invaders. Pretty nifty defense mechanism. However, it is so terrible for us with RLS that I’m at a loss for words for people who have both conditions.
A hallmark of RLS, in addition to a lousy dopamine transport system, is low BRAIN iron. Not low ferritin. Everyone’s dopamine receptors need iron to function properly. It is the grease and glue that keeps them chugging along. Since the RLS brain has poor iron stores we rely VERY heavily on that free floating iron in the blood. Mother Nature has seen fit to lower that free floating iron as night approaches (via hepcidin) in everyone. That night time drop doesn’t bother the non-RLS world, but it does us because we don’t have brain iron stores to fall back on.
Pink, I’m a one trick pony. All I know in terms of treating RLS is ferrous bisglycinate. I take two 25mg capsules about an hour before bed on an empty stomach and within that hour my RLS disappears…for one night, so I must repeat every night. Several other people on here have tried this trick and had good luck with it, overall. I’ll post their stories below.
Anyways, I think you should try this trick before you go for an infusion. I think EVERYONE should try this trick before going for an infusion. I just bought a 180 capsule bottle from Amazon for $14. I’ve seen it as cheap as $8.00 for 90 capsules. I hate telling people to spend money on something that might not work, but I recently bought a small matcha green tea Frappuccino from Starbucks and it cost me over $6.
Back to you and CKD. I read that it’s not unusual for people with this condition to develop something called “Anemia of Chronic Disease.” It presents with the person having normal or even high ferritin yet they are anemic. Doctors are rather desperate to find solutions for this comorbid illness because it’s not good for the CKD patient. I recently read that they will take one of two approaches. They will try to lower the Hepcidin via Heparin, a blood thinner. Please double check me on that. Or they’ll go straight for the infusion which bypasses the Hepcidin. It’s a Catch 22 because that infusion will simultaneously raise Hepcidin. Double check me on that as well. Once again, please think about trying my ferrous bisglycinate trick.
You’re back!!! It’s great to read your post!! Thanks so much for your encouragement and advice! I remember noticing that I had good nights when I took the iron and then bad nights when I didn’t take it. Your advice to take it every night made sense to me and It has made such a difference! I can only hope that others on this site will try this approach
***And this one from Pennygates as well:
3 months ago
That is a question I ask myself. My RLS continues to be subdued by Gentle iron.
Things like hypophosphataemia should of course be checked for in the ‘workup’ for diagnosis and obviously prevented or treated. Similarly if there is any question about osteopenia ( which I have in bucketloads and bad osteoporosis too NOT due to hypophosphataemia ) then this should be prevented e.g. need and possible DEXA scan +/- treatment instigated .
Yes the ferrous bisglycinate seems to be the best oral iron which in my latest Bare Bones document and first consultation with the doctor , should be started and for some weeks whilst the iron panel etc. blood tests are done and awaiting results . Great if it works instantly then that is WIN WIN for the person. But plus I do agree that for some people it does have the ‘prn’ or ‘as and when necessary’ ability to really help some people. This should all be documented as possibilities for aiding us poorly RLS folk.
Yes, iron infusion is one possibility, but I (note the I) would put it near the bottom of things to try, NEVER in the first place. It takes 4 to 6 weeks or longer to kick in (and it shouldn’t) and needs to be repeated on average once a year. So if someone is in their 50s that could be 30 infusions for most likely only partial relief? Osteoporosis here I come? Do you think there’s any chance the infusions have negatively impacted your Osteoporosis? That’s really not a condition to joke about.
If serum ferritin had a major, or even minor role in RLS, then we should have RLS all day long, not mainly at night. It’s serum iron (that drops dramatically at night) which should be doctors first target in treating RLS. Neither doctors, nor us on here, should be telling people it will take months on supplements before a RLS patient begins to see improvement. A lot of people on here, as we know, get immediate, that night relief, from a highly bioavailable form of iron supplement. And if people combine that supplement with no eating after around 7pm it really packs a powerful punch.
1. Assess and sort out IRON status (of which measuring ferritin levels is just a part)
Definitely (as well as lifestyle changes and avoid particular drugs or foods etc) firstly try the :-
Iron bisglycinate .. as you say, a highly bioavailable form of iron supplement plus ‘with no eating after around 7pm it really packs a powerful punch’.
( I eat very little after 3pm which really helps me… then v hungry for breakfast at 6-7am😂)
Ferritin is NOT important as such, but only to use as ONE of the measurements to assess the iron status of the affected person. Plus it is an important measurement in monitoring progress or otherwise when taking oral or I-v iron .
Yes, it can take 4-6 weeks for the ferric carboxymaltose or similar to ‘kick in’ fully in the iron responder people after an infusion . Sometimes people are fine for years and don’t again drop their ferritin for a few years , at least 10 years in some cases.
Many may need more than one infusion.
My story as an example is :-
—- 1st infusion when (ferritin 40ug/L) went up to ~450ug/L and symptoms much improved after 3-4 weeks
—-5 months later ferritin dropped to ~100ug/Lwith return of bad symptoms and a 2nd infusion given
Better after 4 weeks with ferritin = ~600ug/L
—-10 months later ferritin dropped to ~200ug/L and bad symptoms. given 3rd infusion
—- now nearly 2 years later and my ferritin hasn’t dropped below 450ug/L …. 👍🤞🤞🤞for the future…
Obviously I have been keeping a close eye on my general blood parameters including phosphate levels , TSATs etc.
My osteoporosis started when I was in my 30s.. ( I’m 68 now) way before my RLS became very problematic and >25 years before I had my first iron infusion. I have an appalling family history of it on my mum’s side and all us siblings have had significant osteoporotic problems, fractures etc. I am having regular DEXA scans and watching carefully for any significant worsening of my osteoporosis, hopefully 🤞not..
The infusions are relatively cheap
-very safe
-reduce the amount of other expensive , side-effect-riddled drugs… as maybe the iron works completely or more likely improves the situation so the person needs much less adjunctive medication,
-reduce the use of DAs
-reduce the incidence of augmentation.
-they cut the wasting time for people who are not fortunate to have great improvement with iron bisglycinate, but are still told to take oral iron for months and persevere sometimes for years without other help..
Iron infusions should be used as first line—-
By which I mean, after at least trying iron bisglycinate , all the time investigations are being carried out after the first consultation.
These tests will confirm the diagnosis and check if there are any comorbidities which might be complicating the disorder . Whilst seeing how well the person may be faring with the iron bisglycinate .
Iron is by no means the whole story for RLS . Neurotransmitter dysregulation and many other probably complex mechanisms are factors involved.
BUT this is such a simple cheap therapy to give FOLLOWING ORAL IRON BISGLYCINATE (which maybe required on a p.r.n. basis throughout some people’s lives…)
Kakally, have you or anyone in your family been checked for Ehlers Danlos Syndrome? Though in addition to low bone density you would have to have joint hypermobility and a few other symptoms. It is a VERY genetic syndrome. 30s is very young for osteoporosis, but not for Ehlers.
Here is what I found about iron infusions and osteoporosis. The article implies that even one infusion will do this:
However, this is not the case in patients with IDA who underwent intravenous ferrum therapy. For these individuals, the risk (adjusted HR, 2.21) for osteoporosis was even higher than all individuals with IDA (adjusted HR, 1.81). The result is in agreement with the conclusions of previous studies that revealed iron load is a risk factor for osteoporosis [9,13,14,15]. Intravenous ferrum therapy is commonly used in patients with IDA; however, iron overload has been shown to affect bone remodeling directly by inhibiting the activity of osteoblasts [9,13]. Another report confirmed the role of iron excess in osteoporosis by inducing an oxidative stress reaction [14]. Ferrum infusion therapy has been noted to increase reactive oxygen species, and elevate serum TNF-α and IL-6 concentrations, thus subsequently inducing a dose-dependent increase in tissue iron content, changes in bone composition, and trabecular and cortical thinning of bone accompanied by increased bone resorption [14]. There was also evidence demonstrating that, in patients undergoing ferrum infusion therapy, iron deposition in the bone impairs osteoid maturation and inhibits mineralization. The mechanism involves the incorporation of iron into crystals of calcium hydroxyapatite, which consequently affect the growth of hydroxyapatite crystals [9,15]. On the other hand, iron overload inhibits osteoblast and fibroblast proliferation and differentiation, and collagen formation, while enhancing osteoclast apoptosis [9,15]. Another minor explanation we suggest is that ferrum-sole infusion therapy may have a “hemodilution effect” for blood calcium. Without transfusion of blood content, the blood calcium may be substantially decreased under ferrum infusion therapy alone, thus resulting in osteoporosis
Well that’s good that tests were negative, but currently there is no test for EDS - it is based on symptoms:
People with cEDS may have:
joint hypermobility
loose, unstable joints that dislocate easily
stretchy skin
fragile skin that can split easily, especially over the forehead, knees, shins and elbows
smooth, velvety skin that bruises easily
What’s really startling is that in one study, 92% of EDS patients complained of RLS symptoms. To me that’s unheard of. In any given auto-immune population the number of those with RLS usually run as high as about 30%. Nowhere even close to 90%.
It can take years or even decades for people with that cluster of symptoms to get a diagnosis. EDS is just not on doctors’ radar.
1. Let’s get RLS onto the core curriculum for medical students, GPs and trainee neurologists .
2. Let’s FIRSTLINE assess and sort out iron status , not just with ’normal’ people’s levels but with knowing that some people’s RLS symptoms can be improved with I-v iron but needing their ferritin to be much higher 2-300+ug/L sometimes.
After that (plus obviously lifestyle changes, avoidance of RLS-worsening drugs , foods , behaviours etc) then if necessary get going with alpha 2 delta ligands etc but keeping DAs very much lower on the list and with very cose monitoring.
I am sorry but think I have replied but cannot see my reply. I am so bad with navigating this website (and all websites snd computers generally) let me know if you haven’t had one
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