Anaemic again

But hopefully it will be sorted soon - I'm feeling at death's door here

The main symptoms are horribly restless legs at nighttime, which seriously interferes with my sleep, and a frightening amount of breathlessness upon exertion. I can't walk any distance now without needing to stop and take a rest; I couldn't keep up with my 73-year-old mum in a shopping centre the other day, for crying out loud. That's not normal for me and I don't like it at all.

So I finally got a blood test done yesterday. Phoned up the IBD nurse this afternoon. Have to give her credit. I've called her useless in the past, but she was excellent today. She did sound rather miserable, but she always does when speaking to me - I think I'm "that patient." >_>

Got most of the results back - haemoglobin 8.6, ferritin 5, CRP 39 and ESR 28. (Forgot to ask about B12, gah.) Ferritin is a measure of iron stores and 5 is pretty low - well below the normal range. I enquired about iron transfusions. This required carefully explaining I could not have Cosmofer, 'cos I'd had an anaphylactic reaction to it in the past, but I could have Ferinject - that was okay! The nurse told me that the hospital didn't have Ferinject and she would have to speak to my consultant about it.

Cue mental banging head against the wall time. But, against all expectation, the nurse did ring back and she did say I could have Ferinject. Result! Last time I had a Ferinject transfusion, it literally cured my restless legs overnight. Hopefully it will cure my breathlessness too. Because honestly, even though I have active Crohn's with a stricture leaning towards partial obstructions, the anaemia is actually bothering me more at the moment.

Bonus question time: It's my birthday on the 19th January and hopefully will be going to see Life of Pi. I have not been to the cinema in years. If I have a stricture, would it be suicidally dumb or just normally dumb to get a box of popcorn? I adore the stuff...

Shame. I can do 'normal dumb' superbly, but I'm not sure even I am dumb enough to do 'suicidally dumb' :-/

Popcorn flavour jellybeans isn't a bad idea though! I might just do that, if I can find any.

I don't know, tbh. I think it's a mixture of the Humira (the meds usually give my blood cells a right bashing) and the Crohn's.

NCOT, i can totally relate with you. it's like "yeah, i'm flaring, but my anemia is so bad that it gives me more symptoms than my darn UC!" the restless legs are the worst!! i can't get them in a comfortable spot.

i will have to ask my doctor about ferinject. i haven't heard of this. i'm allergic to ferrlecit so i've just been doing oral iron since my allergic reaction- what hell. i prefer getting blood transfusions but i know my doctor says it's not good to rely on them.

the sad part is that after 14 iron infusions, my iron level was still only 25! last time few times i've had it checked, it's around 12. i just give up with stupid iron. i start humira next week so i hope that doesn't make it worse. didn't know that was a side effect. my hemoglobin sucks, too- it was 6.9 in december. right now it's 7.9 thankfully.

Hi NCOT,
Sorry you are struggling. I also think it would be suicidally dumb to eat popcorn with a stricture! I love popcorn too, but have given it up. My first symptom of Crohn's was severe anemia....I thought there was something wrong with my heart, and was actually admitted to the cardiac unit! My heart is just fine, it was a bleeding ulcer in my small intestine. I know there is such thing as anemia of chronic disease, but your numbers seem really low. Are you sure that you aren't internally bleeding somewhere in your GI tract? I found the iron infusion to be helpful withing a couple of days. I hope you get to feeling better soon, and happy B-day!!

NCOT- Happy Birthday and sorry you are not feeling well. Hg 8.6 would qualify me for a blood transfusion. I always feel so much better after one, especially if I am short of breath from the anemia. I have never been offered the iron infusions but then again, my low H & H are caused from major blood loss so maybe that explains it. I hope you can promptly receive your iron infusion and get on track to feeling better soon!

Are the Dr.'s suspecting bone marrow suppression from the Humira? I had that problem with Azathioprine. The GI wanted to put me on an injectable that would stimulate Bone marrow rbc production, Epogen but I decided to change drugs instead

Hope you get this behind you fast and enjoy the Life of PI!

Thanks, pmedic and nawlinscate :p

I've totally given up on the popcorn idea - feels like I've been partially obstructed for the last 24 hours :-/ Food'n'stuff is still getting through, but I did have a few minutes of literal agony last night after which I was left sweating and white as a ghost. I don't feel ill enough to go to A&E, but I'm honestly considering making an appointment for surgery - I'll see if my intestines clear... :-/

pmedic - I dunno, I haven't spoken to my consultant and my appointment with him isn't for another month yet. I'm gonna tell him I want to come off Humira (assuming no improvement in the meantime); if he wants me to stay on it he'd better have a good reason for it - and provide access to regular iron infusions! I don't blame you for changing drugs, I'd have done the same thing.

nawlinscate - Wow, that is going slowly. For anybody at risk from an allergic reaction to iron infusions, though, dividing the dose and/or slowing down the infusion rate is a good idea. I didn't think anybody had iron injections anymore: the only thing I know about them is they're meant to be horribly painful.

I loved my Iron Infusions! Gave me back a bit of my life.. I was able to walk up my stairs without passing out.. I had to do them every 2 weeks for 3 months then break for 2 then back to them..