Saturday, 19 November 2011

IgE mystery

Does anyone else have issues with their IgE levels? Mine were 2000+ just over 2 1/2 years ago, I don't know how long they'd been this high as my blood was routinely taken when I was admitted with mega bad pleurisy pain. I was put on steroids after this, which I've been on since, and over time my levels have fallen, but they apparently should be ideally under 100. Clinic before last, they took some blood with the intention of finding out the levels, hopefully having them low enough to possibly bring me off steroids completely as they'd been dropping steadily since when I'd had the occasional blood take i.e. annual reviews and when I had clinic yesterday they were still 460, so I'm still on the steroids.

I don't hate them really, they help my appetite and I've had my share of bone scans showing that my bone density is still thankfully normal, however, I should get off them eventually, I don't really want to tempt things to go all crap. I'm only on 10mg a day at the moment, I've had the odd burst up to 30mg for 5 days at times like when my chest pain is worse than usual, and then always go back to my maintenance 10mg. It's just a bit annoying knowing that my levels won't go down to what they'd like, I know I've had (got..?) ABPA so obviously thats a factor, but I don't fully understand the whole thing anyway!

Other than this, clinic was okay, my lung function was up (thankfully! After 3 weeks of IVs they should know what's good for them!) and are about 60%ish, I'm not entirely sure as I don't get the percentages at clinic. My weight has fallen 2 kg within a month or so, and I got a right bitch for that, but in my defense my appetite is so erratic, and I do try, I eat plenty so I really don't know where the food goes. One of the mysteries of a CFer.

I think that covers it. I don't remember finer details really. I did have some student nurse sitting in my room all throughout clinic which was slightly entertaining, he didn't have a clue about most terms that were mentioned (cue very blank expression when me and my dr were having the IgE discussion) so I'm presuming he must be just starting out. Thankfully he didn't ask me 'when I caught CF' as otherwise I would have taken the piss fully and probably said something like 'I caught it from a gypsy at the fair' or something nicely ridiculous just to see if he believed me.

3 comments:

Gemma said...

My IGE levels are always high, I think they are about 200-300 at the moment but I stopped my treatment a few weeks ago as they are alot lower than when I started treatment. I never have steriods, I am treated with antifungals (voriconazole), my CF team give steriods as a last resort. Perhaps you should ask for some anti fungals instead? xx

Anonymous said...

Megan - do you have you ever had skin-prick allergy tests? I have a raised igE level, it was found that I'm allergic to various different everyday things - sometimes avoidance can help reduce levels, althought it's not always possible ...

Gem said...

Hmmm. I think the anonymous person might have a point there. I've had skin prick tests for allergys and it showed up a couple of things (the fucktards tested "stinging nettles" on me to see if I was allergic to them- everyone reacts to stinging nettles don't they?! So I had a lovely red itchy arm after that!)

It would be awesome to get you off pred though. It's great to see your levels have come down though!

Lovelovelove xxxxxxxxxxxxxx

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