Vasculitis a lifelong mystery ?

Vasculitis a lifelong mystery ?

Recently had dramatic admission to hospital presenting with right upper body chest pain and left temple pain and tenderness

Blood tests confirmed raised ESR and CRP

I have been started on a daily dose of 40mg of Steroids (pred) to prevent blindness before temporal artery biopsy scheduled for next week

Should have definate diagnosis by 21st Sept

A bit overwhelmed by this as I'm a type 2 Diabetic on Insulin and the med causes my Diabetes to be a challenge to control

On top of that I had major surgery last year for Colon Cancer followed by Platimun based Chemotherapy that has left me disabled but thankfully the cancer has gone

But I can't help thinking what next?

The Doctors assure me GC Artertis is not connected to the cancer or chemotherapy

I've had what I think has been urticaria like vasculitis since a few months after my first child ( now 42) but it was never diagnosed as that there were just lots of allergy tests

I had fibromyalgia diagnosed in my 40s and in the past few years had Lupus tests done which looked positive but then later said no

Interestingly once I had my menopause the Urticarial vasculitis stopped

6 Replies

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  • Best of luck on your journey through this June

  • Be positive and keep smiling! Good luck with the next stage in your journey.

  • Thanks for the lovely begonia (v like a double rose)! Mystery is right 😏...June: you put it ALL so well πŸŒŸπŸŒŸπŸŒŸπŸŒŸπŸ‘πŸ‘πŸ‘πŸ‘ I'll be thinking of you: sending mega positive healing vibes your way. My feeling is: you've had more than your fair share of this πŸ˜‰β€ΌοΈ Take care

    πŸ€πŸ€πŸ€πŸ€ coco

  • Don't build up your hopes on a "definitive" diagnosis - fewer than 40% of TABs are positive, especially once you start high dose steroids, and a negative result doesn't mean it isn't GCA, it means they didn't find the giant cells that give the illness its name. There are a range of reasons for that, not just that it isn't GCA. It may not be affecting the temporal artery, even if it is the lesions often skip sections and may not be present in the bit they look at - and not least, both the surgeon and the pathologist must be good and experienced and, unfortunately, that doesn't always happen. It is all too common for a junior to get the job to practise. It remains a clinical diagnosis - so if it is negative and they try to tell you it can't be GCA but you still have the symptoms, especially if you reduce the dose, do ask them.

    Good luck - you have had more than your share haven't you!

  • Thank you for a heads up .I do find to be as knowledgeable about your illness without being hysterical helps and there is lot you can do help yourself including sharing and support

  • Absolutely!

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