Holy iron infusion, Batman!: Had my first infusion... - LUPUS UK

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Holy iron infusion, Batman!

Silvergilt profile image
14 Replies

Had my first infusion today - they gave me the quicker (more expensive) version due to potential issues with the longer version. Within a few minutes I was feeling better than I have for months. Rather than get home and go to sleep as I tend to do whenever I drive anywhere, I took the car for a wash. Then I got some errands done at home. Then phone calls for help with the garden (huge construction works here in my area and I may as well get everything done at once). Then I did more errands.

Do 'Normal People' feel like this all the time?! I can't even believe it, it's glorious. We still have to figure out what is going on with my iron absorption, and I'm now more than a little irritated my GP just kept throwing tablets at me for over a year and a half when they clearly weren't working, just saying my low levels must just be 'normal for you' - I've felt bloody awful for so long I didn't know there was any other way to be.

Next infusion is next week. Maybe I'll, I dunno, put up some shelves. Or discover cold fusion.

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Silvergilt profile image
Silvergilt
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14 Replies
magSLE profile image
magSLE

Hi Silvergilt, great news!. It took 8 mths for the Ferrous Fumerate (iron tabs) to work for me. My body wasn't digesting the iron tabs due to organ leakage/abnormal bleeding. I suggested Iron Infusion but my GP advised otherwise as my iron levels were rising slowly & too much iron can trigger another condition. Glad it's energised you as I remember how frustrating Anaemia is. Think I might change GPs!

Silvergilt profile image
Silvergilt in reply tomagSLE

I'd like to think your GP is right, but honestly I know this stuff is really expensive, hence putting me off for ages. Would be nice if expense wasn't the main reason for putting off this sort of thing, but meh, sometimes it seems to be the way of it. They had a fight just to get my faster-infusion. I've been on tablets off and on for ages, and just couldn't manage to get anywhere. Ongoing investigations to figure out why it's happening, hopefully. But for now...ALL THE THINGS.

Fennella02 profile image
Fennella02 in reply toSilvergilt

Iron infusions can be very toxic - they don't work for everyone. I reacted badly to both Cosmofer and Ferrinject (the expensive, quick one). On top of that, it caused me to flare so badly that my Hb didn't improve at all. Plus my vein swelled up like a rope which was very painful. Long, slow courses of Ferrous Fumarate are the only way for me.

Naturally, I'm delighted that you're feeling better. We get so used to feeling rubbish that it's like a breath of fresh air to feel normal!

Silvergilt profile image
Silvergilt in reply toFennella02

Well they certainly are working for me, and I'm thankful they did the quicker version - they had to fight for it, but my pathology would have made the slower infusions problematic. Granted, they had to hunt a while for a vein, mine are notoriously bad to get a needle into, bless them.

magSLE profile image
magSLE in reply toFennella02

Hi Clareb67, Thanks for sharing your experience, guess my GP was right not to give me infusion as I take other meds. Long periods of unwellness tend to affect my body (pain or exhaustion) & my mind (frustration, confusion). After 8/9 mths of chronic Anaemia, I've finally got my energy back & living again. Hope you're feeling better. Take care!

Misty68 profile image
Misty68

Silvergilt,

Thanks for giving me a good laugh! Your post sums up long term fatigue perfectly. I recently got given oral morphine after an operation, just three days worth. Good grief, what a revelation. No pain at all for the first time in thirteen years or more. I actually could not remember what it was like to be pain free and have energy. I achieved more in those three days that in the last decade! If only the NHS accountants could see the real cost of inadequately managed illness. I felt I could change the world, wondered if this was what it was like for normal people and understood why they had such busy lives, then my morphine ran out. Sigh...

Silvergilt profile image
Silvergilt in reply toMisty68

This. Granted, it's always ZOMGADDICTION...but if one has a lifelong condition and is always going to need pain medication no matter what, then addiction sort of becomes a point of 'meh'.

I'm going to ride the 'iron high' for a while and just hope they can figure out what is causing the problem now, then maybe I can stop leaking iron like sieve.

AnnNY profile image
AnnNY

I know how you feel. I was in a flare and my doc put me on 20 mg of prednisone. I got up the next day and cleaned my house. Unfortunately, my muscles are so out of shape, I ended up with all kinds of muscle strain. Drat. But starting PT next week.

Silvergilt profile image
Silvergilt in reply toAnnNY

woot! Congrats! I honestly don't know if I can get much for pain (I've tried, GP is very reticent to give me anything stronger than paracetamol because ZOMG ADDICTION) but if the main issue was iron deficiency, then it explains my racing heart, blood pressure and a bunch of other problems too. I have been playing it smart today and I did a few things but tonight I'm having night as downtime; I've been warned about leg cramps so going to get some calcium in and rest up.

Hurrah for iron! Glad you are feeling so well after your first infusion. I had to take iron tablets before Christmas - thankfully I tolerated and responded well to them. It is quite a revelation when you start to realise what is 'normal' for everyone else and you suddenly can be a part of every day life. Long may it last!

GlasgowHen profile image
GlasgowHen

Your post made me smile, prednisolone on higher doses made me feel like that,it was wonderful while it lasted! I cleaned out cupboards and did all those things that had just been left because I had been so unwell. I too had wondered if that was what normal people felt like.

I'm quite interested in the iron infusions, my ferritin is at 5, it has been dropping over the last months but my haemoglobin is just within the normal range.lm having a lot of investigations for them to see if they can figure out why and it seems only then going to treat as I can't tolerate oral iron. What is the name of the infusion you had?

Glad you are feeling better

Silvergilt profile image
Silvergilt in reply toGlasgowHen

No, sorry, I don't know what the name is. It might be worth bringing it up to your GP though if you're feeling rubbish, I'm going through investigations as well but for now since the need is clear they've gone with infusions but it needed my rheumy to suggest it.

Glad it worked for you. Its funny how you forget how you used to feel. I've had rock bottom ferritin with below average HB for ages. Been on tabs forever which I don't absorb and have IBS, gp won't transfuse until HB continues to be below 8. Last HB 9 ferritin 6. Bupa here we come.

heartgirlx4 profile image
heartgirlx4

Hi, i had a iron infusion in january, i dont seem to be brighter i still feel tired, i go back to the hospital for check up to see if my iron levels have gone up, i dont think they have tho, how many rounds of iron infusions should someone have

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