Iron didn't work

My iron level was 70 so the doctor (the specialist at John Hopkins) had me go for an iron infusion on March 10. Not only it didn't make the RLS better, but it's worse now than it was before. Before the infusion I was taking 600 mg. gabapentin at 7 pm and 300 mg. gabapentin at 10:30 pm. That was working pretty well. Now I'm awake an hour after falling asleep with the awful sensations and kicking. I'm also waking up with kicking legs in the early morning while I'm still asleep.I'm a mess again and the doctor is away until next Monday. I really believed that the iron would help.

26 Replies

  • Really sorry to hear that. Very frustrating for you. I have no idea why this is happening for you but I'm sure "tredlight" will come in to explain all and point a way forward.

    Good luck.

  • Thanks

  • Iron infusions dont work for everyone, just like any other treatment that will work for some and not others. So, are you taking the Gabapentin still..? Or did that stop when you had the infusion. ? Did the doctor at Hopkins say how long it would take for the iron infusion to work. ? If the infusion hasnt worked and you are not now taking the Gabapentin, then you have nothing giving you relief from your RLS.

  • The first and second nights I tried to do without the Gabapentin but my legs went crazy so I had ended up taking it. The 3rd night I figured I'd better take the Gabapentin and forget about counting on the iron. But now I'm having more trouble than before...5:00 in the morning RLS which I never had before and 3:00 in the morning pacing last night.

    The iron is supposed to work immediately. My doctor is out of the office until next Monday and there is no one else there who specializes in this 😰👎

  • Hi i have never had an iron infusion but i know scores who have.Many were told it could take up to a month to feel any benefit.Some didnt get any improvement until after their second infusion.Some got amazing results but it didnt work for othere.Only time will tell.Good luck

    Pipps x

  • Oh, I do so hope you're right. He made it sound like it would work immediately.

  • Oh. Then i can only say, hang on til you can contact your doctor. See what your doctor has to say whats happening, or actually whats not happening.

  • Trying...I just can't understand why it would get worse after that.

  • Elisse, i am desperate to try anything, you advised me on the reductions of the Prempexola, and have halved it, going sort of OK, but i get desperate enough to try anything, read about putting sopa under your sheets, an thought nothing to lose. NOW HERE'S A THING, when i get on the bed and lie there with my legas very apart, it abates, how can this be, do you know about this

  • Don't even ask the question! If it is working good for you- then accept it.

    If you want to break the magic mirror- then you can search or google " placebo"

    But I wouldn't 😰

  • so true, i must exercise my faith muscle more, thanks for the reply

  • Pippin2 and Elisse and Madlegs1,

    I am scheduled to see the doc on the 28th and another repeat iron panel not til mid May (in my opinion I should repeat the blood work before I see him.....)

  • Thanks for sharing that, Grammie12.Sorry to hear that didn't work- hope you find some relief. I am determined to take no medication at all but was seriously thinking of the iron infusion - now rethinking! :)

  • I don't think you can just drop Gabapentin and pick it up again. I was advised to just stop it and take a DA by my GP and had 2 weeks of hell. I believe it has to be run down slowly with some transitional help like Tramadol. It could be that you are suffering from the changeover?

  • @john - I agree fully- Gaba should be both titrated up and tapered down gradually. Otherwise - problemos!

  • I didn't stop taking it. The infusion was a week ago and I'm still taking the Gabapentin in addition to having the iron. I would think, or maybe not, that with both I wouldn't have the need to be pacing the floors at 1:00, 3:00 and 5:00 am😓

  • I didn't stop it.

  • Iron worked for me like turning off a switch. Have faith. RLS is such a complex biological/neurological condition coming at folks from many different directions. Some I'm sure have spinal/nerve interaction. But most have iron, dopamine, mineral dysfunction especially in the brain. I'm trying to get ahead of Mg supplementation - they all keep me awake - even taken in the AM. I found this discussion regarding unbound iron, Calcium, and Magnesium with a result - Copper deficiency - always something!

  • Did the iron work immediately or after a while?

  • Being that RLS makes you crazy for a "cure" I searched and searched the internet and discovered Black Strap Molasses as a help. So I tried that in the night along with everything else (yes, even soap under the sheets). It helped and doing more research discovered ferrous bisglycinate as a supplement. I did it for a few days (once daily 18mg) and in less than a week RLS symptoms were mostly gone. I discontinued it and RLS came roaring back. Finally had my Ferritin and % saturation tested - Ferritin was 49 - after 3 months daily iron supplement - Ferritin went up to 106. Stopped totally and some RLS came back at Ferritin 76. I'm due for a re-check on Ferritin soon. I still take it 1-2 days per week.

  • Does it affect your stomach?

  • No - not at all. Take it 1 hour after eating and 2 hours before eating again.

  • Guess I'd better check with the doc to make sure that I can take that given that I also had the infusion.

  • The magnesium keeps me awake too

  • I read somewhere a while ago that there is a small-ish percentage of rls sufferers for whom no amount of iron will help. Something to do with dna and what genes it is carried on. Am hopeless at remembering details but you might be able to google. I have half feeling that the research was carried out at Johns Hopkins. However, I have also heard of people who took quite a while before the iron infusion worked - maybe up to two months after the infusion.

  • I've read all about it and you are right; it doesn't work for everyone 😩. What I need to find out whether it was supposed to work right away or do I give up the thought that it will work? That's the question. I'm supposed to see Dr. Early at Hopkins on the 28th of this month and I'm expecting a call back from him on Monday. I'm still using the Gabapentin which does help 90% of the time.

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