Is it going to be another flare

hAve had quite a up and down illness so far nearly three years from onset of GCA been on the very slow reduction plan recently all seemed OK down to 12/11 mg but last couple of days have had niggling pain above left eye at top of forehead also left ear seems weird not excruciating pain but just there niggling away and of course I think here we go again after doing well and feeling reasonably fit will it mean yet another increase in Pred? I try not to tell anyone as they think here she goes again some of my sons clients are doctors and have told him it should be over by now and that 2 years is a maximum he says do you think you are reliant on Pred ? I do most of the things I used to do so it hasn't been a burden to anyone else and I just make my excuses and go to bed early if I am feeling extra tired. I was so up beat but this has brought reality back. did have a nasty fall down the stairs a couple of nights ago which shook me up. am I a malingerer? just needed someone to offload it on!

5 Replies

  • Hi Vpankurst

    Emphatically you are not a malingerer, my Initial thought would put it all down to your recent fall. That would have put a lot of stress on your adrenals helping your body recover from the shock let alone any bruising or pulled muscles. and we all know that GCA doesn't like extra stress.

    As for anyone telling you you should be over within two years is obviously not a sufferer. PMR And GCA takes as long as it takes whether the doctors like it or not! I've been diagnosed three and a half years with GCA, and 18 months undiagnosed prior to that.

    Just have a good rest for a few days if you can. Let yourself get over your fall, and hopefully things will return to normal.. Well as normal as life can be with GCA! Take care.

  • Offload all you like - there are a lot of people on here who will back up the concept that "GCA should be over in 2 years" is a load of bull - to put it relatively politely. What on earth makes anyone think we WANT to be on pred? Your son's clients are not you, they do not have GCA, they are probably a bit younger too.I think you should just be pleased they aren't YOUR doctor.

    Yes - you are reliant on pred - to manage the symptoms of GCA which can often last for 5 years and more. Everyone is different and no-one has any right or grounds to tell you that you should be well by now. I have what is almost certainly GCA but which manifests mainly as PMR with a few added extras. It hasn't gone away after over 10 years but I live well, feel well, don't bother anyone.

    If you fell down the stairs you have every right to feel all shook up ;-) I came off a bike about 3 years ago - I still haven't really got over it in some ways, confidence at least. At the time it was the beginning of a major flare which I have finally put behind me. You did it 3 days ago.

  • I don't know where these doctors get their information from. A friend of mine who was diagnosed with PMR at the beginning of last year has been told by her rheumatologist to see him next February and he expects her to be off pred by then. Why do these doctors seem to think that PMR/GCA is a two year illness?

  • Oh dear Vpankhurst, if you're a "malingerer" and being questioned about being "reliant on Pred" after less than 3 years, then I don't know what that makes me as it took 5.5 years for my PMR and GCA to go into remission and for me to get off steroids. Don't listen to anyone who hasn't actually been there and got the proverbial t-shirt - they haven't walked in our shoes.

    I'm so with the others in believing that your setback is purely due to the trauma to your body caused by the fall. Just wrap yourself in an extra bit of cotton wool for a few days, and either mark time where you are at present on the slow reduction plan or even increase back to 12 for a few days if you feel the need.

    Also, with GCA affecting your temporal arteries, do try and avoid being out in any windy conditions unless you have your head covered with a hat or scarf. That is something I learned to do after discovering that the slightest wind would bring on neuralgia type pain and make me fearful of an impending GCA flare - I became the neighbourhood 'hoodie' for a few years!

    Big hugs, although only virtual ones, and I do hope you soon feel better.xx

  • Thank you all for your replies! As you all say they havent been there and nobody wants to be reliant on steriods thank goodness for this website and being able to run these things past people who KNOW what it is all about. i was doing so well and feeling really good until the fall so as you say that probably didn't help. Will take on board all your help and reassurance and let you know how it pans out.

    I. Have took on board your virtual hugs thank you so much!!!

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