Iron Infusion

[Isle-of-Axholme]

My consultant is considering giving me an iron infusion to increase the ferritin level in my blood to 100.

If there is anyone in the RLS Forum who has had an iron infusion, please could you relate your experience by addressing the following questions.

What was the overall experience like?

What were the side effects if any?

How long was the stay in hospital?

How soon could you drive after the infusion?

How long was it after the iron infusion that you felt the benefit?

How long after the iron infusion could you reduce your medication?

Many thanks in anticipation that you may be able to help

Isle of Axholme

[Joolsg]

I had an iron infusion at St George's hospital, London in 2019.You turn up about 15 minutes before appointment. They take you through and insert cannula in your arm. You sit in a room with about 20 other people having iron infusions. The iron looks rusty brown and is infused in about 10 to 15 minutes. Then they give you a saline infusion for 10 minutes.

They ask you to sit for 30 minutes, in case you have a reaction.

Then you go home.

I felt absolutely fine and driving is fine.

6 weeks later they do more blood tests.

My serum ferritin went up to about 800.

Sadly, I'm in the 20% group that doesn't respond. It made zero difference to my severe RLS.

However, now I am completely RLS free because I changed meds. I was on Oxycontin and pregabalin which didn't help. Buprenorphine has been miraculous for me.

Good luck.

The odds are in your favour.

[Isle-of-Axholme in reply to Joolsg]

Thank you for your encouraging reply.

Isle of Axholme

[nocturne]

I had one about 20 years ago, so I'm afraid I no longer remember how long it took. Maybe an hour or so? (More about this below). I also didn't have RLS then, so I'm afraid I can't comment on that aspect. But I did (ad still do) have tons of autoimmune issues, including poly-arthritis. All my joints froze up after the infusion, and I could barely walk to my car. Once I got to my car, I realized I couldn't drive (I drove a stick-shift then), so had to sit and wait for a couple of hours until some ibuprofen pills that I took kicked in and my body "thawed out."

I had a conversation with my hematologist recently, and he said that one way of mitigating the joint inflammation is take a small dose of prednisone before the infusion. Also, he said that there are several kinds of iron infusions, and some take an hour, while another might take six. Each apparently has its pros and cons. I hope you have a long talk with a well-informed doctor, and I wish you the best.

[nocturne in reply to nocturne]

p.s. Be careful with prednisone, though: it can make RLS a lot worse. Of course, if the dose is small enough, it might be okay. Another topic to ask your doctor.

[SueJohnson in reply to nocturne]

I haven't found anything that said prednisone made RLS worse.

[nocturne in reply to SueJohnson]

I posted about this earlier this year, and some others have echoed their own experience. My adverse RLS reaction to prednisone made me realize that things are far more complicated than the conventional wisdom of "inflammation exacerbates (or according to some on this forum, even *causes*) RLS." We all know that prednisone is a powerful anti-inflammatory, but several people besides me have attested to the fact that our RLS became uncontrollable after taking it.

[SueJohnson in reply to nocturne]

I looked back at your previous post and only one person said a steroid made her RLS worse. However with all drugs people react differently and I am sorry you had that experience.

[nocturne in reply to SueJohnson]

Thanks.

[Kakally]

Great about you getting an iron infusion!

Everything that Joolsg said about what happens. Easy peasy…

I am lucky in that it worked well for me. The effect gradually dropped off after some months and I have eventually had 5 infusions over the past 5 years. Each one lasting longer. My penultimate one lasted 18 months and my last one 8 months ago is going fine.

I am unable to come off buprenorphine as the augmentation I got from 4 years on rotigotine has almost certainly damaged my dopamine receptors. But I am very happy with how I am.

I had to fight my local hospital to get repeated infusions but have now been accepted when my ferritin drops below 450ug/L and if my TSAT and phosphate are ok

All the best and hopefully you will be one of the ~60% iron responders

🤗🤞👍

[Isle-of-Axholme in reply to Kakally]

Thank you for your encouraging reply.

[Purpleyam]

Hello, I had an iron infusion 2 months ago and am scheduled to re-test my blood next week. My experience was same as Joolsg, except that I had a typical reaction from the infusion; I had flu like symptoms for 1 day with severe fatigue. Then it went away and I was fine. I feel more energy now but not sure if my RLS has reduced.

[Isle-of-Axholme in reply to Purpleyam]

Thank you for the warning about flu symptoms an fatigue.

[fritzb43]

Know that there are a number of iron solutions. Some, like low molecular weight iron dextran, may take up to six of seven hours for an infusion. (That was my first infusion, and I was totally symptom free for about fourteen months. My serum ferritin was 9.)

Currently, my hematologist uses Injecti-fer, half the dose administered initially and the other half a week later. Each infusion takes about 45 minutes. Never had any problems. I get an infusion about every 18 months. Note: I do take a "cocktail" of other RLS meds: tramadol, gabapentin and a VERY LOW dose 0.25 mg of ropinirole. I am 90% plus free of symptoms.

One final note: DO NOT allow the nurses or techs to give you benedryl as a relaxant or for any other reason. They likely do not understand that benedryl causes severe RLS symptoms.

Best of luck to you and best wishes from the USA!