Iron infusion again

[Silvergilt]

Had my last appointment with my rheumatology team at my old address. Now I've moved I need to go to new hospital team. I've had crushing fatigue for past couple of months and my specialist as a 'parting gift' arranged for me to have a quickly administered iron infusion on the spot. Two hours later I came home and slept for a few hours but I'm now up and feeling better than I have done in weeks! I really hope the next team will give me a follow up infusion and I can have these more regularly. I can take all the tablets in the world but they don't do owt. I know this option is expensive but I feel almost human again! Anyone get regular infusions? Is there a way to present my case to a new team in hopes this can be a regular thing? I'm always astounded how much better I feel.

[Fennella02]

Hi SilverGilt. I can't tolerate iron infusions but my GP and Rheumy would love me to have them regularly. My HB can go as low as 5 or 6 during flares. Do your iron/ferritin levels dip very low as well as your HB? I would hope that you won't be refused subsequent iron infusions but it is important to remember how very potent iron is - particularly in IV form and it has made me very ill in the past.

Enjoy your new found energy xx

[Silvergilt in reply to Fennella02]

Hi there! Yes they can be pretty intense but I haven't had a bad reaction so far - a need for a lot more water is all I've noticed so far but that's generally true anyway, I'm terribly dehydrated and I'm doing my best to get it under control. I'm borderline anaemic - hovering at 8, but I've been on that borderline for literally years; so much so a health pro said 'maybe your iron levels are just naturally low'. I might believe that one if I didn't feel like death on toast all the time!

Which infusion did you have? There are two different types - the cheaper version or the more expensive yet less problematic one. I always have the second as the first has a tendency to create problems. It's funny as it's something so rarely given out the nurses at clinic would come in to have a look at it (most have never seen it before) and make jokes about claret 😄

Well I guess I will take my chances. Seeing GP in two weeks for referral on and maybe get some luck with infusion again. Dutchman very happy with my current energy levels, i actually can communicate with him in more than monosyllables again.

[Silvergilt in reply to Silvergilt]

My appointment for the new rheumatology team was cancelled so now I have to wait till October to see anyone. I was supposed to have an infusion top up but it didn't happen. I'm having all the usual symptoms: exhaustion, shortness of breath, palpitations and I struggle to sleep because of the pounding in my ears at night, but nothing else I can do but ride it out. Sigh.