iron infusions - how often and how many?

[daisydaisy26]

Hello dear fellow RLS sufferers, would like to find out about your experience with iron infusions. My mom just had one couple days ago. Her ferritin is 96, and saturation is 19.6. Today she was able to nap during the day, and she wasn't able to do that for a while because of RLS. She is also on Pramipexole 0.375 and Neurontin 1200 mg. While we are waiting for an appointment with a neurologist to discuss her augementation that she seems to be experiencing, can someone give feedback about iv iron. Do you need several infusions and how often? Did they help anyone really to have RLS under control at least for some time? How soon the effect kicks in? I would really appreciate it.

[Kakally]

I am happy to have a chat with you if you like. I am so rubbish at typing . I’m not sure if you are able to private message me.

[smilingjane in reply to Kakally]

KakallyI too am seeing my nuero soon in relation yo my RLS and want to ask about iron infusions. Would it be too much trouble to ask you to copy and paste the info you are sending daisydaisy26 in your pm?

It would help me because I haven't got a clue about what to ask or expect.

Thanks so much

Jane

[Kakally in reply to smilingjane]

actually I’ll copy and paste some of it but it always upsets some of the people and then that upsets me

[Kakally]

I’m better at chatting about it as it is so individual and I am a rubbish typist. I find speaking easier. If I can privately give you my number I’m happy to chat 🤗

[smilingjane in reply to Kakally]

That would be great, thank you

[Kakally in reply to smilingjane]

I would find it so much easier to talk to you about I-v iron , when and whether it can be repeated. It is an individual thing. If you can private me I can give you my number and you could call for a chat if you like🤗

[Joolsg]

They will do more blood tests 6 weeks after the infusion to see if levels have increased.They will then decide if another infusion is needed.I had an infusion in 2019 and my ferritin increased to 785. It made no difference to my RLS.

But 60% do show improvement, so the odds are in your mum's favour. As she has been able to nap, despite severe augmentation, that's a positive sign.

Her RLS won't improve until she's off Pramipexole completely. Reduce that slowly, as advised by SueJohnson.

I suspect your mum will need a low dose opioid like methadone or Buprenorphine to control her RLS when off Pramipexole, so look for a doctor now who is familiar with RLS and willing to prescribe low dose opioids.

[smilingjane in reply to Joolsg]

Out of interest, would an MRI be needed again to see if the iron had reached the brain?🧐

[Joolsg in reply to smilingjane]

If only. It's impossible to get the iron infusions in the UK. As most neurologists aren't even aware of the link to low brain iron, they are highly unlikely to order MRI. MRI waiting lists are high for MS and Parkinson's so I can't see it happening.

[daisydaisy26 in reply to Joolsg]

It's interesting, is it possible to see whether there is iron in the brain by MRI?

[Joolsg in reply to daisydaisy26]

Yes. Specially trained technicians can do it.

[Amrob]

Generally you'd have one iron infusion, see whether it makes a difference to your RLS and then take it from there.

If it is beneficial, you'd get your iron levels tested every 6 months or so.

If you're losing iron quickly it's important to establish the reasons for this (especially as one gets older as it can be symptomatic of things like bowel cancer).

In terms of frequency, I can only speak from experience. I have had 4 or 5 iron infusions over the past 12 years (one roughly every two/three years). However, i lose iron monthly through menses. Once I reach menopause, my iron levels should remain more or less the same.

Infusions help my PLMD/RLS only slightly but any improvement is welcome. I have also had infusions to see if they help energy levels (not really).

I had my most recent infusion at the start of May. Following on from that i developed hypophosphatemia (sudden drop in phospate levels in blood) and also my vitamin D dropped radically. Hypophospatemia can be highly problematic and has only recently been identified as a side effect of iron infusions (esp. ferric carboxymaltose). The more infusions one has, the more likely one is to experience this.

I haven't felt particularly well since my recent infusion (may or may not be related) however in all the reading i have done on iron infusions, i've realised they're not as benign as i once thought and would now be loathe to get another one. If however they made a huge difference to my PLMD / RLS that would be a different story entirely.

[daisydaisy26 in reply to Amrob]

Thank you very much for your input, ironically, my mom used to have very low haemoglobin, 10 years ago, and that's how we discovered later one she had bowel cancer. Interesting that RLS didn't bother her that much then despite anemia. It kind of spiked after her total hip replacement, which we were hoping would actually improve it, because she was hurting from hip pain for 2 years, and her RLS is often in one affected leg. For the last ten years we only checked ferritin 4 times, and it's interesting that when RLS didn't bother her, ferritin was 114. Then when it kind of started ferritin was 68. Her last but one was 98 (she took oral iron for 2 months, but was not able to tolerate it well), but in about three months it is 96, and TSAT is also down a bit. Like there is a downward trend. Haemoglobin is fine.

If you could possibly mention what's not benign about iron infusions, I'd appreciate it. I am always a bit concerned about all kind of new medications for my mother, as she is a double cancer survivior (also breast ca), so wouldn't want to mess something up in her immune system. Even though RLS is so bad at times I'd give her anything to stop it. At least I now know thanks to the wonderful people on this forum that we don't need to have another iron infusion possiblely in 6 months, because our neurologist really prescribed it only because I insisted, and only one. She wasn't at all enthusiastic about it. And if not for the forum, I would have no idea about this possibility.

[Amrob in reply to daisydaisy26]

I hope my reply didn't alarm you. In trying to find out the cause of my recent ill health (which began approximately one week after my iron infusion) i read fairly widely on iron infusions. What i discovered was that researchers are still learning about iron infusions and their effect on the body. Personally, i wasn't aware there was such a thing as hypophosphatemia as a result of iron infusions until after my 5th infusion and that was as a result of my own research. I also came across mention of other potential risks eg iron overload which may not be exclusive to people with haemochromatosis. This article possibly explains some of the risks better than I can. onlinelibrary.wiley.com/doi...

Any medical intervention requires a risk:benefit assessment. My point really was that given the insubstantial benefit that I get from iron infusions, i'd probably be more inclined to not have one again given that there are not no risks associated with them.

I wouldn't say to anyone, don't get an iron infusion. Like with anything, i'd say do your own research, discuss with (knowledgeable) others, and consult with medical professionals to satisfy yourself.

I do hope your mum gets some relief.

[Amrob]

Someone replied to another post recently about when effects of iron infusion fully kick in (from memory approx 6 weeks post infusion) but i'm unable to locate that reply. Apparently it is set out in the Mayo Algorithm's section on iron.