Living with ITP

I have had ITP for around 20 years. I was being tested for other things when I was diagnosed. (Count of 20) I have had a hysterectomy an a couple of smaller operation besides that requiring general anaesthetic. I am always tested prior to any op and my consultant has said as long as I have a count of 40 or above the op can go ahead without medication.

I occasionally have the pop prick bruising (usually in the summer when it's hot) and do bruise very easily. However I've only ever taken prednisone once and as far as I'm concerned it's a nuisance having to be aware But I don't think about it too much.

I decide when I need a blood test I don't see a consultant anymore my GP oversees the condition.

I know I'm one of the lucky ones but hopefully not the only one.

Chin up everyone 👍😊

4 Replies

  • Snap, even to the 20 years, (pred 3 times, but I was told in 1996, 150 for a g.a.),but I do get very tired.

    Both in the UK and Belgium, I do see a consultant, as in UK, my local hospital is an ITP centre of excellence, so why not take advantage of that; and in Belgium, the GPs don't know much about ITP, so prefer to refer. I have blood tests every six months, unless I feel I need one in between. My last count was 23, so it's steadily dropping, from 80-100 when I was diagnosed to between 20-40 now.

  • Hope us doesn't drop any lower - the tiredness is the main thing for me so I imagine you haven't any energy at all.

    Fingers crossed we both stay fairly intervention free! By the way I'm 64 and just wondered if age was in anyway relevant 😊

  • I'm 49, and my count has been dropping for the last 5 years or so. I used to teach teenagers, and managed a 60 hour week with a count of 60-80.

    I have good and bad days; I use the good ones, and curl up on the bad ones. I do things bit by bit, so taking my Mum home to Devon and coming back to Belgium was a 4 day trip, with overnight stops, so I wasn't driving for too long.

  • It's not an age thing then!! Well done for not letting this strange illness stop you 😉

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