iron infusion question

[Bks429]

hi all, would love to hear thoughts on iron infusions: side effects, benefits, etc. My doctor has ordered one but I’m just not feeling comfortable about it…

[Hidden]

What exactly are your reservations? I've had 3 or 4 iron infusions. Unfortunately they don't help me all that much.

The safety profile of IV iron preparations has improved considerably over the years. Anaphylactic reactions are rare. Some people feel mildly unwell for a few days afterwards but that wasn't my experience.

My haematologist advised that occasional infusions don't present a problem in respect of iron overload. Obviously if one has a condition like haemochromatosis then yes it is a problem.

They're often administered to women who are pregnant and experiencing iron deficiency.

The way I view it , the worst possible outcome is that it doesn't work.

[Hidden]

From your history it sounds like you tried oral iron a while back and got complete relief from day one for a month until you got down to last drop of the DA. I have seen this scenario play out often. While on a DA, or even lowering the DA, the iron at night thing works great! But when you get to the point where you’re almost off, the oral iron is like whistling in the wind. However, once you’re far enough out from the DA the iron at night should work again. And, you should probably use ferrous bisglycinate and it should be taken on an empty stomach about an hour or two before bed. If I were to take ferrous sulfate, or if I were to take the iron in the afternoon, it would do nothing for my night time RLS.

[Joolsg]

Are you completely off Pramipexole yet?I had an Injectafer infusion in 2019 but sadly made zero difference to my RLS. I was off dopamine agonists. I'm in the 20% camp that do not respond. You could be in the 60% camp who see dramatic improvement.

It was very safe and you're monitored all the time. Iron infusions are much safer now and adverse reactions are very rare. The benefits far outweigh any negatives.

[DataRN]

I had my first of a series of 3 yesterday. This is my second time. Last time was in 2016. Do you know what iron your doctor ordered and what the dosage is? Really nothing to worry about. Any iron infusion is given with precautions due to potential for an allergic reaction.

[Bks429 in reply to DataRN]

He’s prescribed: Ferumoxytol- non Esrd? Currently I take 1500 mg gabapentin (2hr intervals) and 50 mg Trazadone, and Ferrous sulphate every other day.

[DataRN in reply to Bks429]

Ah Feraheme! Good news is that Feraheme is a quick infusion, only takes 15 minute-ish to infuse. Whereas the iron I just received takes about 2 hours per each dose. My insurance wouldn’t cover Feraheme. Otherwise, that would have been my preferred iron brand. Feraheme does not require pretreatment or a test dose prior to administration. However, they will likely give you Loratadine and/or a steroid such as dexamethasone prior to your infusion to lessen the chances of any side effects. My friend gets Feraheme and absolutely loves it…I would be getting Feraheme if health insurance in the US put patient care over their greedy pockets!! Good luck and please let me know how it goes!!

[marsha2306 in reply to DataRN]

at Hopkins they test for allergic reaction prior to infusing the iron.

[DataRN in reply to marsha2306]

Yeah - with certain iron infusions they have to do that. This time I had Venofer - which doesn’t require pre-infusion allergy testing.

[marsha2306]

I’ve had RLS sinc 2015. I’ve had 2 iron infusions since then. The most recent one was in August and it raised my ferritin from 51 to 450. After about 6 weeks I’ve had virtually no RLS.

[Opie__ in reply to marsha2306]

that is so great, congrats. My ferritin was 11 at last blood work. Praying iron is the answer as well for me

[Kayakcarole]

I just had my first iron infusion 5 days ago after a telemedicine visit with a neurologist/ sleep medicine specialist at Mayo Clinic. She recommended Low Molecular Weight Iron dextran but when I got to my local hospital for the infusion they gave me iron sucrose. I did have a low level headache (which is one of the more common side effects) for two days. I haven’t noticed any benefit yet but am remaining optimistic. I was surprised that it took only 5 to 10 minutes and was given by using a manual push syringe, but the color is very black, like ink.

How long before others have noticed some benefit?