Flare? Taper? Nothing at all?

[Cobalt2sister]

hi dear folks. Curious about this reaction which came and went. Have GCA. Been tapering from 80 and now at 40. 28 days after reduction to 40 had a one day reaction: some temple artery puffiness, very exhausted, only mild temple headache into occipital and mild blurry vision. But it was only the one day then back to normal so I didn't change pred...or do anything but stay in bed all that one day! I had traveled 3 hours day before. So what was that and can I continue my taper which is due ( the one month down to 35)?

Also since previously I had some artery removed for biopsy on other Temple is it possible to get symptoms on that side or with artery gone should it never act up anymore there?

Sorry if these questions are ignorant...all still just groping around this illness and my body!!! Thanks for your input. (And wouldn't you know my rheumy just cancelled next weeks appt and moved it to middle of July!) Take good care everyone and wishing you all good health and healing.

[DorsetLady PMRGCAuk volunteer]

Would say probably reaction to the previous day’s travelling -can be tiring at the best of times -without adding in GCA

Provided you are sure you really feel okay now then go ahead with reduction-and good luck.

But as SnazzyD says do monitor your head issues..

[SnazzyD]

If I ever got anything like that in the first year, I took it that I was skating on thin ice regards flaring, so either doing way too much (which didn’t take much) or the dose was only just holding me. Firstly, I’d say slow down and secondly, hold on for a couple of weeks to make sure this isn’t going to keep going and settles. Regards your temple pain - They removed that bit of artery because it’s easy to get to without brain surgery. Your GCA wasn’t removed on that side as a result of taking that offshoot of artery away. GCA can affect all your head arteries and not necessarily all that the same time or in the whole of an artery. So you can still get symptoms on that side even after the biopsy. In the Forst 18 months my biopsy would sometimes feel puffy and sore if I was very tired or run done and during withdrawal after reducing.

[Cobalt2sister in reply to SnazzyD]

Thank you for reply. Very helpful. I think maybe I am doing too much when I reassess my days. Helpful and interesting about biopsy site. I've so much to learn...and this is place to learn it! Thanks.

[PMRpro Ambassador]

Once the biopsy has been done they obviously can't find evidence there - but it is only used because it is an easily accessible bit of artery that has a good chance of being affected. It doesn't mean they will find anything and that is because GCA can affect any artery and you may have it in another section or an adjacent artery that could cause symptoms.

[Grammy80]

How did I miss this? Sorry to hear what you experienced, but I would take it as an alert. You were probably tired from the previous day...after having GCA for almost three year, I still have questions and still am on alert. I would err on the side of caution and go slowly, listening to your body all the way. So glad you are here....and no question is ignorant..look at all the wise folks on here to walk with you~! Take good care and rest..xo💕