A 2024 study on that gathers all evidence on iron therapy via supplements/ infusions for RLS concudes that there is a MODEST but clinically significant improvement in RLS.
Realistically that means some will have excellent results, some will have poor results. And yes, if we have severe RLS, a modest improvement won't help us.
But for that small percentage of patients that has excellent results, it's worth pushing for treatment.
I personally know and have met 2 women who have had infusions and have had a dramatic improvement in their RLS.
But I have to admit it didn't make any difference to my RLS.
And we know from DesertOasis that she and many others on here have completely resolved their RLS by taking ferrous bisglycinate last thing at night.
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Joolsg
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A clock that is broken tells the correct time twice a day!
What they should be telling us is the number who had full remission/ relief and those who had none. Or a chart giving the exact degree of relief obtained .
We have always said here that only about half of people get any benefit from iron therapy.
"Completely resolved", is a bit of a stretch. What we will never know is "was the damage caused by the Dopamine Agonist drugs?" I wish I would have gotten my infusion FIRST.
I still can't believe that my doctor and neurologist would order DA drugs prior to prescribing DA drugs.
Iron infusions have helped me for years. However, I will say that I had one on August 20 this year and it took longer than 8 weeks to help. But now it has limited mine to very mild and not so frequent.
Thanks for sharing this Jools. It's good to see meta reviews like this.
I wasn't able to access the full article but I'm unclear as to whether the "modest improvement" is at an individual level or aggregate level. As in, do most people see a modest improvement, or averaged out among all studies' participants, do iron therapies result in a modest improvement?
Also, the statement that the four largest trials were funded by pharmaceutical companies was interesting. I wonder if that means manufacturers of IV iron formulations or companies that make other RLS drugs.....
thanks Joolsg. Largely a very good assessment but a few things I’d like to look at more closely. Plus of course , as WideBody says, what damage was done first by the DA.?
Plus if you give iron oral/infusion , its good effects will almost certainly be limited if the person is still taking a DA at the same time.
It is vital that iron assessment and treatment is given a chance as first line to work out who will be helped and who won’t be. Then other medication can be given with DAs used only in people who have pretty much terminal illnesses.
Here’s one more datapoint: several years ago I asked my doctor for an iron infusion. Went to a hospital in Chicago where I was hooked up to an IV for an hour and was given a blood red solution of Iron. I had minimal improvement of my symptoms for a few weeks. Sadly, it did not work for me. But…. I would still recommend it to others, since for some people, low iron is the cause for their RLS suffering.
Thank you for this post! My general GP looked me in the face and told me iron has nothing to do with RLS. I have since switched to someone who actually listens. I go to a sleep doctor for my meds and have yet to find someone who will even try an iron infusion here in the states, but I do feel vindicated! Thank you for all you do for us on this site and rest assured that you have indeed touched our lives and made them better!
Have you tried a hematologist? My neurologist sent me to a hematologist who willing did an iron infusion despite the fact that I did not previously have an anemia diagnosis. He just wrote down anemia and then insurance covered it.
Hi Rwall. My ferritin is 82 and hasn't changed for over 6 months, despite supplements taken as Sue recommends. My Naturopathic medicine doctor was hesitant to prescribe an iron infusion, although he softened some when I sent him the Mayo Clinic protocol. But, he wanted to lean on me seeing an RLS specialist. I saw that specialist virtually (Dr. Buchfuhrer). Dr. Buchfuhrer told me that the first thing he'd recommend is an iron infusion (1000mg), but that insurance won't pay since I'm not anemic. Next was Gabapentin. But, he also wouldn't prescribe anything for me until he sees me at least once in person (I can understand that).
I found an infusions clinic in San Francisco with a doctor on-site. That doctor saw my labs and was very comfortable with prescribing an iron infusion (although, I'm paying for it out of pocket -- expecting that insurance won't pay). They start with a very small dose first to make sure there is no allergic reaction. And, if ok, then then crank it up. The small dose took a little under an hour in total. Then, the remaining amount took an hour.
I don't know the results yet, because that was only a week ago. I was definitely achy for a day. And, my RLS is worse the last couple days, but who knows if that's my body reacting to the iron for the moment, the Covid shot I got a little less than a week ago, or some other item that I'm not aware of. I will say that Dr. Buchfuhrer told me that it will take about two months to work, if it works (he said he finds it helps about 60% of the time) and that it usually helps for 1-1.5 yrs and then another one is needed.
I've come to believe that there have been past studies, not about RLS, that are not very positive about iron infusions. My Naturopathic dr said high iron levels are not great for men. Also, there used to be some allergic reactions, but that was about 1 in 200,000 and was almost 50 years or more ago, from what I understand. And, I think if you are ok paying out of pocket and dig, I bet you can find a clinic. I called 4 clinics and only 1 of the four would do it and were reasonable price (mine cost $750 in total, but I think I got lucky and believe that's pretty low). I searched online to find. My search term was "iron infusion san francisco".
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