IV iron infusion and questions - Restless Legs Syn...

Restless Legs Syndrome

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IV iron infusion and questions

Newmomma567
Newmomma567

Hello again everyone! You might remember me, the one trying to get off of ropinerole because, in addition to augmentation issues, it also suppresses prolactin, a hormone necessary to produce and maintain breastmilk. I've had a hell of a time trying to withdraw from it, and I have visited a neurologist through the referral of my OB. This neurologist is the absolute worst, so I am searching for another one (Ask me later for details if you're interested... I have a running commentary with my other doc about how awful she has been. One quick example, however: told me "not to worry" about augmentation issues with dopamine agonists... I "have time," because I'm too young and "we can always just increase the dose." [I was already on 1.5 mg.])

At any rate, one thing she did do was have me get my ferritin levels checked. I figured they would be low, but when the number came back as 7, I was shocked. I knew I felt bad (Neuro told me "all new mothers are tired; it's normal...", but I digress) but now I had indisputable proof that there is something severe going on.

Long story short: I have had to start a series of 5 IV iron infusions. The hematologist has already told me even they can't get me anywhere near the normal range of 50-75 (so, the suggested "over 100" to get relief from RLS is probably out of the question for a long, long time...) but I'm curious: for those of you who have done this treatment, did you get any relief for your RLS, and if so, how long did it take to feel any relief?

11 Replies
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Hi. I had an iron infusion 2 weeks ago even though my ferritin levels were 114. No relief so far but I do suffer with severe refractory RLS. So I'm not holding my breath.

Others may have been more lucky and an infusion has helped them. I understand that it helps around 40/50% of sufferers.

Your situation of having recently been pregnant and such very low ferritin levels (and maybe other iron values) is not a standard one, so reactions experienced by others may not apply to you. I hope that providing your body with iron, one way or the other will help your RLS.

I had an iron infusion that had no effect on my RLS, but my starting situation was roughly similar to that of rls-insomniac's. And this nit at all comparable to tour current situation.

Hello Newmomma567,

First of all congrats on your new bundle of joy! I had an iron infusion back in May. I did have good results from it. It was a gradual change. It took about 2-3 weeks to notice a difference. Prior to the infusion my ferritin was measured at 37. A month after the infusion my ferritin was 480. I question the validity of those post results. The treatment did not make my RLS go away but it certainly relieved the symptoms for several months. My level was recently measured, 5 months later, results= 210. I truly hope the treatment helps you, good luck

WideBody
WideBody in reply to Merny5

Usually it is recommended to wait 8 weeks after the infusion retest. The infusion will skew the results. I am glad you got some relief.

Since you are getting 5 infusions, my guess is you are getting iron sucrose. If you have a choice go with Injectafer or Iron Dextran. That gets into the macrophages better and hence into the brain better, it is what the specialist for RLS recommend.

I was at a ferritin level of 30. 8 weeks after my last of 5 infusions. I was a 114. The goal is to space out those 5 infusions as much as possible. (This is my opinion, not an expert).

The absolute best place to start on Iron and RLS is this paper, read it like a love letter.

sciencedirect.com/science/a...

If your Ferritin was a 7, I suspect you are in for an interesting year ahead of you. All good, and not just RLS. Get ready, because 8 weeks after your last infusion you will probably want to start oral supplements. For me, liquid Ferrous Sulfate works best with less stomach issues. (I have tried a bunch).

Good luck, can't wait to hear the good news

Newmomma567
Newmomma567 in reply to WideBody

I don't get a choice in what iron I am given, alas. But you are right- Iron sucrose.

WideBody
WideBody in reply to Newmomma567

I am sorry you don't get a choice. It is the same in America. A doctor is affiliated with a hospital and hospitals use only one type. (I am sure there are reasons, and I am sure they are monitary). I may be needing a second infusion, if I do, I will simply insist on what the experts recommend. (My Doctor is backing me on this, so I will have to travel to a different hospital.)

Newmomma567
Newmomma567 in reply to WideBody

I’m in the US as well. Yeah... you get what insurance let’s you have. 🙄

Joolsg
Joolsg in reply to Newmomma567

It’s a shame they didn’t give you Injectafer as that has the best results with the least risk. But, any infusion is better than nothing. I really hope it makes a difference.

My ferritin was 9 so somewhat similar to your. The first infusion slowly helped and after a month or two I felt a noticeable difference with rls. But then slowly got worse again. I went back to my gp and had a similar effect to the first. The third infusion seem to have made a much more lasting effect an has been over a year. I still get rls but no where as bad and is quite liveable only the odd really bad night now. I was told that when your ferritin had been low for a long time it can take a while for your body to remember how to produce it correctly. Fingers crossed you find relief soon

WideBody
WideBody in reply to Alc71

Your story is similar to mine. Do you know the type of iron used in your infusions/ How are your symptoms now? (I have an occasional bad night too, last night was not too good.) Do you have involuntary jerks? Does it affect other parts of your body? Do you take any other meds? Thanks

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