I have a GCA, and wondered if anyone thought they would never get better

[stookie]

I have had GCA, for about a year now, any have come down from 60mg of perdnisolone per day to now 4mg, I feel worse now than ever, no energyamd pretty painful, and have to rest for 2 to three hourse per day, making work very hard.

Just wondered if anyone has had same experience

[PatriciaAnn]

I don't have GCA but what you are describing is what many of us with vasculitis suffer. For the first couple of years after diagnosis (with WG) I wondered if I would ever get better. I certainly felt much worse than pre-diagnosis. My energy levels were nil. I had to go to bed every afternoon for at least an hour, maybe two. My mobility was seriously effected. Thankfully I was nearing retirement age but there was no way I could have coped with working - and at that time I was self employed and working from home, but I had to pack in.

I'd be interested to know what age you are as my understanding is that GCA is seldom diagnosed below the age of 50, but there are always exceptions. High dose steroids are the usual therapy reducing very slowly over months. As I understand it treatment usually lasts from one to two years. Unfortunately there is a relapse rate of about 50%. Maybe you have reduced too quickly or your were not sufficiently stable and cannot cope on the low dose you are taking presently. I would advise that you speak to your consultant about these problems. Hope that helps.

Patricia

[stookie]

Thanks so much, it really helps to get some elses opinion, as one feels such a fraud, and you feel you are such a bore to the family. I am in early sixties, and I too have my own business, which I have had to wind down. It seems to be a catch 22 with the steriods, one tries to take control with excerise, but if one does too much it seems to put you back to square one, have you any advice

stookie

[patsy]

Hi Stookie I know just how you feel.I have MSG I am in a permanenent state of fatigue. The come down from a high dose of steroids is a shock to the system even though its done slowly. I sufffered terrible pain and could hardly walk but my consultant put my dose up tp 10mg and I am relativly pain free at the moment. I would have a word with your doctor or consultant and see what they say.This illness takes it toll on us all with this horrid disease, what ever medication we take has side effects none as far reaching as these steriods but they are doing a job.Thank goodness I have retired I would not be able to hold down a job now!!!!

Chin up luv you are not on your own.

Patsy