Iron infusions

[Joall]

Morning. Can anyone give me info on having an iron infusion. How long does it take and is there any side effects?

[Helpatlast]

I had iron infusions when first being diagnosed 11 years ago as my platelets were sky high and sometimes the high doses of iron can kick it down - it didn't for me and I then had bone marrow tests and got confirmation of ET and on to Hydrea. I think the treatment programme would be individual to you and your blood counts. I had six weeks of it and it took a couple of hours every day, it's intravenous in the same way chemotherapy is (I had it in the chemotherapy unit) via a canuela - it didn't make me ill at all although I did feel a tad out of it and odd each day after it finished and definitely needed to go easy for a while after - but I was working full time at the time and used to go from work each day to hospital for treatment, rest in the evening and could still work next morning - but it definitely made me feel a little wobbly, strange each evening and give yourself a relaxing weekend in between too as do need to recoup a bit. All the best for your treatment, i know it works for many.

[Joall in reply to Helpatlast]

Thank you for replying and the useful information. I've had ET for 3 years but now I have progressed to MF so anaemia has kicked in. I wasn't given much info at my last heamo appointment only book in for an iron infusion, (mine too is in the chemo centre.). I've got no idea what to expect and didn't realise it might not be a one off procedure.

Thanks again.

Jo

[Paul123456 in reply to Joall]

Jo

How anaemic are you? I think most of us here suffer anaemia to some extent, especially PV when anaemia is part of the treatment.

I somehow thought you were possibly early stage MF, did you not post that one dx was MPN-U/TET2 (same as me)?

Apologies if I’ve got my wires crossed

Best Paul

[Joall in reply to Paul123456]

My HB 100 but I've been on 3 iron tablets a day for 2months with very little change. Yes that post was me, these new changes keep cropping up, it's so difficult to get my head round it all.

Thank you Paul again .

[Paul123456 in reply to Joall]

Jo

If your Hem (a MPN specialist?) is advising increasing your iron intake then you know that eating iron rich foods at same time as foods high in Vit C improves absorption. Calcium has opposite effect and hinders absorption

So eat your steak and nuts (I think liver even higher iron) with glass of orange juice rather than milk.

Have you had a BMB? And received a DIPPS score?

Best Paul

[Joall in reply to Paul123456]

I'm not sur

[Joall in reply to Joall]

I'm not sure if my hems a MPN specialist, I've never asked but everything you just said I didn't know . Like about calcium etc..

My last BMB was Feb 2016 but again I don't know my DIPPS score. I only keep on top of my blood results because I take pictured of them after I've been in for screening before going back to our patients. I'm not doing very well with this am I?

Jo

[Rachelthepotter in reply to Joall]

Jo, you ‘re doing fine. Its your medical team that are underperforming: they should keep you snd your GP in the picture abt your blood counts and their plan for you.

You can ask for a referral to an MPN expert team for a second opinion if you are in England.

[Rachelthepotter]

Hi

I have MF, and was told that blood trsnsfusions ( which make me feel better for a while) will eventually cause iron overload which is nasty. So the idea of deliberately infusing more iron sounds odd.

Regards

R

[Joall in reply to Rachelthepotter]

Hi

I am going to have to ask more questions before this procedure is done. Thank you for the advice.

Best wishes

Jo

[Indigo42916 in reply to Joall]

I tried it, as I was originally diagnosed with an iron deficiency not ET. I was not anemic though. Unfortunately, I had a rare allergic reaction.

Had to use supplements, which worked slowly over time.

I would suggest seeing an MPN specialist.

Take good care.

[Joall in reply to Indigo42916]

I have called the hospital today to speak to my hem, I'm waiting for her to call me back about all my questions and the advice I have been given on this forum.

Thank you for replying

Best wishes

Jo

[Deece in reply to Joall]

Hi Jo I had an iron infusion about 18 months ago due to low feretin levels. It was done intravenously and I was in for 4-5 hours. They infused a certain amount and then checked to see if there was any reaction. Once happy that I was not reacting to the intake, the rest was infused. Once complete I had to stay on the unit for about an hour just to make sure all was ok. I only had one treatment and had no adverse reactions. Good luck. Denise

[Joall in reply to Deece]

Thank you Denise. That's reassuring to know.

Best wishes to you too

Jo