Worried

After what I thought was a 'good' visit to doc on Monday I ended up back there today. Phoned triage nurse for advice re headache and within the hour had seen doc, who then phoned on call rheumatologist at hospital who upped Pred to 60mg (from 15) ordered blood tests and am now waiting for call from hospital to go for temporal biopsy in next couple of days. Our NHS gets bad press sometimes but I can't complain about service I've received recently. Just complaining about feeling such a wimp 😥

8 Replies

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  • You are not a wimp...............you are stepping into unknown ground for you.

    Yes I had GCA and yes I am in remission coming up to my 7th year.However when I started out on this journey, there was only one forum and one lady went out of her way and steered me through the first six months. Now resources are available and we know so much more.

    When you feel like it, follow this link and read all you can: pmr-gca-northeast.org.uk/

    Click on the map on the home page and see if there is a support group near you. Nothing like actually talking to people in the same boat.

    We are here for you, all of us all of the time, just remember 'You are Not Alone'

  • Thank you for your kind words. I'll have a look at that link.

  • Poor you! You must be in shock. It's a scenario that we all go through in our heads and you are there. There is nothing wimpish about you. Thankfully everybody around you is acting with the appropriate degree of urgency. You're in good hands it seems. Remember if the biopsy is negative all it really tells us is that GCA is not present in that portion of artery. The point is have your presenting symptoms improved with the Pred big dose?

    Good luck. Will be thinking about you. Let us know all about it.

  • Thank you, kind words appreciated

  • Definitely not a wimp! Please do as jinask sugests you'll find you are not alone either. All good wishes please keep us posted about how you get on.

  • You are not a whimp; it's scary monster stuff that you weren't expecting. There's no rule book that says you shouldn't be upset or worried. If there was, it probably wouldn't be allowed on here. The good thing is that if it is GCA they've done the right thing. The biopsy might not give you a definitive answer though, but if the 60mg helps, then that's probably the real evidence. If it isn't GCA, you won't be on 60mg forever, it will go down.

  • Hi,

    As others have said, you're not a wimp. But like most of us at the beginning - bewildered and maybe a little frightened.

    Good that your surgery was on the ball - wish that they all were like that. Like Jinasc, I am another GCA survivor, although only in remission for a couple of years, so any questions please ask - anytime - no matter how trivial they may seem!

    And good luck, and as SJ says your biopsy may not give a positive result, but that doesn't mean you don't have GCA, it just means the tiny bit of artery they tested didn't have it - not the same thing at all!

  • Thank you all for kind words and encouragement. Nice to know there are so many knowledgeable people here with words of wisdom and support. xx

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