I have an iron infusion coming up next week, but I'm getting a bit nervous about it. This is because my RLS symptoms seem to be getting better in the last few weeks. maybe due to the iron supplements.
As of the last blood test, maybe a month ago, my Ferritin level was at 26, which is within the normal range, they say. But I've read here that for RLS people, it should be around 100.
Just wondering if there is anything harmful about getting an Iron Infusion if you don't need it that badly. Can it be toxic, or anything like that? Thanks for any information, thoughts, or opinions!
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Laura9594
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The haematology department will monitor you. It is very rare to have an infusion reaction. Levels of up to 1000 are acceptable after iron infusions for RLS and as your levels are SO low, you'll find they probably only go up to about 250 or 300.
Mine went from 145 to 785 and I was fine. However, it didn't work for me.
If I were you I would definitely have the infusion.
I agree with Joolsg especially since your ferritin is so low.
Laura, I would definitely NOT have the infusion. In my mind it’s not even a question. The oral iron is helping!!! I have taken 25mg to 50mg of ferrous bisglycinate every night for the past several years and on and off for many years before that. I take it in the evening on an empty stomach and within one hour the RLS is gone for the night. There are several other people on here who get immediate relief with iron as well. Sounds like you might be one of them? Iron alone is not enough for people who are recently off the DAs, have severe spinal issues or inflammatory conditions like kidney disease.
I am shocked and appalled some on here are telling you to go for an infusion when the vast majority of people on here who got an infusion were barely helped or not at all. Plus, you’re feeling better with the oral iron alone …why upset the apple cart??? Put infusion in the search box and see how many people were helped.
A few weeks on oral iron is not enough to raise your ferritin. Thus, it’s the fact that you’re raising the free-floating iron in your blood (called serum iron) that is helping you, not raising your ferritin. Serum iron plummets at night and that’s why we get RLS at night. Iron is the grease and glue that keeps our dopamine transport system chugging along. This is true for everyone. In addition to a lousy dopamine transport system we with RLS have trouble storing iron in our brains. We have a brain iron deficiency thus we rely very heavily on that serum iron. When it plummets at night we suffer. The non-RLS world has a good/normal dopamine transport system and plenty of brain iron so they are not bothered by that night time drop in serum iron.
I'd say you are right to be cautious and if you are seeing benefits from oral iron then it's worth persisting. While some people find oral iron sufficient to manage their condition, there are others who do not, and there are plenty of people who have benefitted from an iron infusion. The often quoted figure is 60% of people who have an infusion see benefits which mean the majority who try DO benefit. It's also possible that there are other things making your RLS worse such as sugar caffeine, carbs, alcohol, anti depressants, and the long list that is frequently posted here in which case it's possible you could identify and remove one or more of these and then find that the iron therapy is sufficient. I personally seem to have had limited benefit from oral iron and can't say I've ever seen an immediate effect. I believe my benefits have come from a gradual increase in ferritin from about 75 to about 140 but it won't go up beyond that and the improvements have plateaued. I am actively considering an infusion, my view is that it will either work or not - if it does then I have a better quality of life, if not then no harm done from one infusion.
I was utterly against infusions until Widebody posted an article which included the below graph. If I’m interpreting it correctly we with RLS really need to get to and keep our ferritin well over 400. Above 400 and to 500 our RLS brains seem to get some iron similar to non-RLS controls who have ferritin in the low end of the normal range. However, once we hit 600, we with RLS will supposedly have the same amount of brain iron as a non-RLS person has with ferritin of 100, which as far as I’m concerned should be the goal if you’re going to go to the trouble of having infusions.
Sadly, at 400, we have the same amount of brain iron as a non-RLS person has with 0 to 10 ferritin which is not in the normal range. And as you know, Kakally needs to keep her ferritin above 500, in addition to taking tramadol and Butec (see below link). So if Laura, or anyone with RLS for that matter, is willing to be diligent and keep their ferritin at these high levels then I would agree that continuous infusions might be a viable part of the RLS arsenal.
That’s an interesting graph, thank you. There’s quite a lot of variability in the values but the trend seems reasonably clear. Of course it doesn’t guarantee that raising serum ferritin will definitely increase it in the brain but it seems that it does work for some people, and the chart shows a the general issue.
On the bright side, even at 200 ferritin we’re in the game with 1 ng of brain iron. Based on brain iron levels in non-RLS controls we should shoot for 2 to 2.5 ng which means getting to and staying well above 400 ferritin.
I’d be surprised if the haematologist giving the infusion didn’t check your ferritin & other iron results again & also ask how you are before proceeding.
If oral was beginning to work I would definitely give it more time. If any sort of iron works it has to be regularly repeated as the effect wears off & it’s much easier to regularly take oral.
The reason for trying an infusion is if oral can’t get you up to the level your body / brain needs to prevent RLS symptoms. Not everyone needs ferritin to be over 100, just major do but others only have symptoms at lower levels.
There are occasional people who have adverse reactions to IV iron. Thst risk is bit worth taking if oral is starting to be effective. It might well be worth it if oral doesn’t have enough effect.
I actively cannot insight any reputable dr not checking first how you are & rechecking your levels before proceeding with IV.
Thank you so much to all who have commented here! I really, really appreciate all of your knowledge, thoughts, opinions, experiences! All incredibly valuable!
Just to note that my Ferritin level, which started at 10 (almost considered anemic I guess), took about a year to go up to 26 with the iron supplements. If it continued to go so slowly, it seems that it would take years for me to get up to 100. So, I'm leaning towards having the Infusion. But thank you to all!
HI THERE! I have been getting iron infusions for RLS and anemia for a few years now> Take some benedryl right before your procedure and you will be less likely to have swollen and sore jojts in your fingers and wrists and feet.
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