GCA: pain

Has anyone else experienced pain on the opposite side of the head to the initial pain? A few months ago I was happily on 4mg but when I attempted to reduce further by the dead slow method I had a flare-up and have been on 6 mg for 6 weeks. Recently I have had pain in the opposite temple to the one which led to the original diagnosis almost 3 years ago and a very tender scalp. I wasn't aware that GCA could move across.

11 Replies

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  • Hi,

    Before diagnosis my pain was on both sides, and tender scalp all over.

    As I've said many times GCA is not like most illnesses, and that seems to be in all aspects, it doesn't follow the same pattern, nor produce the same symptoms in everybody. That's what makes it so difficult to diagnose, and to live with I guess.

    Are you sure it's a return of GCA, not saying it isn't, but have you ruled out other things. It's a natural reaction to think every new pain is associated to GCA, I did! But sometimes it isn't. Have you requested blood tests (assuming yours were raised) or spoken to GP or Rheumy -that would be my next move.

    Do hope it's not a return of GCA, but please get it checked soonest.

    Good luck.

  • Thank you very much for your good advice. It is exactly like my original pain so if it is not GCA I was misdiagnosed three years ago!

  • Hi again,

    In that case, then please speak to GP or Rheumy sooner rather than later before it gets any worse.

  • I will do that. Thank you.

  • Then it needs a rheumy asap...

  • Oh yes ! When diagnosed 27 months ago...my scalp pain and all other problems seemed to be concentrated on the left side. That lasted for most of the first year and then started moving across the back of my head to the right and front area of my head .The pain is located primarily on the right now. And upper center. Guess I believed it to be normal....whatever that might mean. ;-)

    Good luck to you, CJ

  • Well, at least I am normal! Many yhanks for taking the trouble to reply.

  • It can move anywhere! GCA can affect any artery with an elastic component to its wall. It can affect arteries in the chest area, neck and head, with a preference for certain ones.

  • Let's hope it sticks to just my head then! Many thanks.

  • Sorry to tell you but it can move, when I was diagnosed Jan 2015 I had been referred to eye consultant because of what I thought of as a little problem with my left eye [my optician did an emergency referral] - my biopsy 4days after starting pred at 80mg was positive. Unfortunately, 3days later I experienced the nightmare of losing a lot of the sight in my right eye - despite being on 60mg pred. Wish could be more positive listen to your own instincts. Good Luck xxx

  • t was very kind of you to take the trouble to reply to my worried post. Many thanks.

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