My recent experience of Giant Cell Arteritis

Hello, for the information of others, I am posting my recent experience of GCA as follows:-

I have been suffering from pains in my neck, shoulders and cheeks. My head got so sensitive I could not even comb my hair and my jaws were so painful I could hardly eat any solids. After several visits to my doctors and having at first been told I was suffering from a virus and to take paracetemol, they finally decided I had Giant Cell Arteritis. I have been prescribed Prednisolone, initially 12x 5mg a day, reducing by 2 tablets every 2 weeks. A consultant at our local hospital carried out an ultrasound scan which showed GCA and yesterday I had biopsy to confirm the diagnosis. I was very concerned about having this operation but it wasn't too bad. It took nearly an hour in the theatre and I am not in too much pain. I get the result in a week.

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  • Hi,

    From personal experience, I would say the biopsy was unnecessary, the symptoms indicate GCA full stop! But it's a procedure they go through, although it doesn't always come back as positive, it depends on the sample of artery taken. Not all cells in the artery are inflammed so sometimes it's a bit hit and miss!

    If you have been told to reduce 10mg every two weeks that may be a bit quick, you need to ensure you don't go below the dose that is controlling the inflammation caused by GCA. If you have any return of significant symptoms don't reduce until you've had bloods checked and discussed with doctors.

    I reduced 5mg every month, but only after blood tests had been done and I had no symptoms.

    Good luck, and please keep in touch to let us know how you progress.

  • At least they made the right diagnosis before you lost sight as I did in one eye! My biopsy was very positive after the event and during 4 days on steroid infusion in hosp. Take care and reduce slowly as the others all recommend to safeguard the vision (optic nerve connections). Good luck.

  • Your symptoms were similar to my own of sensitive scalp and a jaw pain: that had me living on soup and porridge as I sucked my food! I also had splitting headaches but was lucky in that one morning trip to GP, afternoon blood tests and following afternoon trip to rheumatologist wrapped up the diagnosis. My ESR of 124 (10 and below is normal) provided the medical proof without any need of biopsy (which was never even discussed).

    My own starting point was 40mg, with monthly decrease of 5mg until 15mg then a couple of monthly 2.5 decreases until 10mg. I am now on monthly 1mg decreases and have reached 7mg. I am now keeping everything crossed that my Adrenal Gland will kick in and start producing natural steroids!!

    Good luck with your reduction plan.

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