Thanks for those who offered help! Learning all the time about Prednisolone - a Flare up is Not a Dare up!

A flare up used to be a dare up to me. In the sense of there's another flare, almost like a dare, and I would respond, in the sense of, 'I can fight this with a little increase in Pred. but not too much' and so forth. However if you don't treat the bullying tactics of GCA with proper respect and, especially, the proper amounts of prednisolone then you are invariably heading for trouble. In the end you might be left digesting a lot more Pred. than was necessary. After 6 years I am still finding this out and hopefully I have finally 'woken' up. Chillingly I now consider if I hadn't taken short cuts with prednisolone then I might not still have this awful disease!

Two weeks ago, going from 6mgs to 5.5mgs, in the advised two weekly fashion, I suddenly started with a flare! However instead of going straight to 15mgs I hung around the street corners of my mind, trying my dare rountine, and slowly I went from 7 to 8mgs and eventually the heady heights of 10mgs and at the end of the first week...... still headaches etc. and feeling ill. Second week and internally the bullying GCA was having a great old time, whacking me about, causing traffic jams of blood in my head. So onwards and upwards I went from 15 and 15mgs then 20 and 20mgs then 25 and 25 mgs and then....finally the doctor's - after advice from helpful Health Unlocked memebers.

I had initially seen the doctor, after my first week and she, I think, had not treated a case of GCA so that left me a little uncertain. However this time she was firm and said if my eyesight was affected go straight to 60mgs, if not then 40mgs. She has requested I return in two days and would be referred if no improvement. The 40mgs and eyesight not being affected was something I wasn't aware of. Anyway home I popped and speedily popped in the required amount of pred. Then about an hour later there was a wonderful release of pain from my headache. It was like a little valve releasing the blood to flow around my head. The pain almost felt it was being washed away and the guilty GCA was banished and shrunk off to the darker recesses of my body.

Anyway lesson for me - and maybe a little advice for others - don't mess about with a bully. Stand up firm but with the right protection i.e. the right amount of prednisolone. If, in doubt, up you go - DON'T slow go - JUST go, go; DON't hold up - Do speed up and DO pick up the pred.

Rules I have become aware of are: If you flare and are on a fairly low doseage, say below 10 mgs ,then add 5mgs or go straight to 15mgs. If no improvement 20/25 mgs and if the headbreaking headache etc. is still there - and eyesight is not worsening then 40mgs. If eyesight is worsening then 60/70mgs and, with the latter, speedily get to a doctor or hospital.

Please may I add that this is from my own personal experience and I am only offering my little anecdote in the hope someone might find it of some assistance. I am VERY aware that we are all different and react in different ways. I am also aware that there are others out there who like me who like to walk their own path - - I have found out that that can possible lengthen the journey!

Merry best,

Ian

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  • Thank you Stkenya,

    Although we are all different, it's so helpful to hear how others have faced similar problems and how things turned out; the complexity of these conditions, symptoms and treatments is bewildering for a newbie like me x

  • Hi, It's certainly a bumpy ride but hopefully yours might be a short one. However if you need help or advice then this is a good site to be on. It might help to keep a diary about what has been said to you and the amounts of pred. you have taken and your outcome. You forget later on - or I do! Bestest, Ian

  • Lesson learnt!!!!!! Don't mess about with GCA - far too many risks...

    But if you are only under a GP and have GCA - then really you need to be referred as an emergency if you have this level of symptoms.

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