Hiand thank you for all your support.
can I ask ..how long ..and I guess this is person centered ..but asking anyway..
how long have peeps with GCA had to stay on pred...I know it's a ..on average..if there is an average..bit the increase has shook me
Hi,
As you would expect, that’s a ‘how long is a piece of string’ question…
Mine - just over 4 years, but as I had been undiagnosed for 18 months and had rather a traumatic start, maybe not your average. Although just after diagnosis, consultant Ophthamologist advised, you’ll be on Pred for at least 2 years, more likely 4 years, and possibly for life.
TBH, I don’t think there’s any point is worrying about ‘how long am I going to need to be on Pred’ - think more positively along the lines of ‘this medication is going to give me a better QOL for as long I need it’.
And honestly, no one can say..
thank you. I kinda guessed it as that but people that don't know think it's a matter of weeks ..like a chest infection. and tbh I'm fed up explaining it.. guess I'm just feeling grumpy due to increase..Again. thank you for advice and to know that there are people that understand the ups and downs of this . xxx
It very much depends - but VERY unlikely to be weeks and the basic approach has always been on a basis of just over 2 years which will be adjusted according to symptoms returning as the dose lowers. GCA very commonly flares up in the first 6 months and possibly can do in the first 18 months.
There is a DVD called "You are NOT alone" available in 3 parts on YouTube and linked here
healthunlocked.com/pmrgcauk...
It was made specifically to explain in plain language to family and friends. Maybe that would help?
Try explaining it is more like rheumatoid arthritis - you have it for life and it can flare up but it can also go into remission for long periods. I know - getting through to people does become tedious ...
thank you am off today so will look Thanksb
It is extremely tedious explaining to people. The rheumatoid arthritis example is a good suggestion. I started pred for GCA end of June ‘22 (60mg) so coming up to two years. I have been on 3mg now for a few months and struggling with adrenals. I expect the journey to 0 (if I get there) will be very slow. Only had one small flare Sept 22 due to too fast a taper and stayed at 20mg for some time. Experienced Covid this winter and a couple of colds but had all boosters and wasn’t ill for long. I didn’t up my dose during these periods, just rested and did even less than usual. Really have to pace activities so can’t say life has been normal as pre GCA.
I'm trying to keep life "normal " but get so tired . then grumpy I fall asleep watching TV. never did this as often . trying to keep to a more ..healthy diet...but am frustrated Also feels like I'm being pulled between eye clinic and rheumatology.... and today got a letter stating I was being tapered down when I'm actually going back up ! lost in post I guess then I have to explain to the doctor why I need more steroids not less ! feels like I'm running uphill
So frustrating. I’m now with endocrinology to safely taper as they say but also have my usual rheumatologist appointment in August. I too keep to a healthy diet bar desserts and the odd glass of wine on holiday - I refuse to be a saint! I find when I ‘fade’ I really have to sit/lie down. I am not the person I was but as a friend said yesterday, it’s two years on, it’s hard to know what is aging and what is the condition / use of long term steroids and associated meds for other issues (TIA/Afib/osteoporosis). Good luck. We’re all somewhere along the same frustrating road.
I'm trying to keep life "normal " but get so tired .
The point is, you cannot keep it normal - or at least not old version of normal… so you have to create a new normal… one that you can maintain…and those around also have to appreciate that.
Doesn’t mean you have to hide under the duvet all day [but some days you may] -you can still enjoy life, but at a slower pace, and sometime that’s not a bad thing… you have to learn to look for the positives not the negatives. It’s not easy, but it becomes easier, if you let it.
hi well I slept all afternoon lol you guys are great
3.5 years but that not at high dose all the time.3.5 years but that not at high dose all the time.
Alliekat— Four years this coming weekend. However, I started at 60 mg in May 2020 after a dramatic onset of symptoms and I’m now down to 5 mg, which my rheumatologist says is close to the cortisol level the body produces itself. I got down to 3 mg a month ago and seemed to have a flare, although neither my rheumatologist nor I was sure what was up. So I had to increase to 6 mg for one month and am now back to 5. Good luck! I wish you well.
How long the taper
How long to increase pred
How long for me on Prednisolone?
How long to stay on low doses
How long at higher dose?
