hi there
In a few weeks it’ll be three years since I first got those mysterious and horrendous GCA symptoms. I’m down to 2.5mg Pred, after an eventful tapering regime- never expected it to take this long and to be as difficult. I understand getting from 2.5 to 0 will be challenging but I am determined, doing all I can to look after myself. My question is….Is there life after GCA?! Has anyone got off Pred and be GCA free? J x
Absolutely there is - but not many hang around to tell the tale -on the other hand, some do!
healthunlocked.com/pmrgcauk...
More in depth view - and a bit long -
healthunlocked.com/pmrgcauk...
Yes I get that you’d want to forget and be done with it, scared maybe that you’ll jinx the good health! I hope I take the time to post if/when I’m healthily off the meds. How are you doing?
Yes, off Pred Aug 2020 after 3.5 years. The last year was spent between 1 and zero mg, so nothing really. Don’t rush that last 2.5mg; I think it can become challenging when people rush it.
Hi and welcome.
Many. In fact, most people with GCA get off pred and return to normal life - if they hadn't managed to do so before as they reached lower doses of pred. In fact, in my experience in the last 15 years, it is more likely to get off pred for GCA and remain free from illness than it is for PMR although most people with PMR get off pred and relatively few get it a second time.
What you will find here is that there aren't that many who are through either and off pred - there are some, DorsetLady above all, but most go off and live life again.
Thank you for that - it feels like forever, but there have been up sides to my GCA journey- enforced slowing down has enabled me to literally stop and smell the roses. Taught me a thing or two as well
Lots of people eventually realise something similar. But actually, 3 years is not bad, many take 4 or five years to get to where you are, whatever a lot of doctors would have you believe. Now you are here, don't rush away again - your experiences will be really useful here for others.
Oh that’s encouraging to hear I’m doing ok! I have often felt very alone in this GCA situation. Helpful to have this forum. Change of topic…has anyone had UTIs whilst on prednisolone? Never had them prior to this but I’m experiencing them too often lately
UTIs - very common for some, if you raise a new post or type UTIs into search community option at top of page -you’ll get oodles of related posts,
Hi Beebo8, you are doing OK for three years in, but this part is likely, not definitely, to be longer than you might think. 0.5mg on a five week taper worked well for me but it's not something set in stone. If at the end of the five weeks if doesn't feel right then just repeat a week or two and then continue downwards. Although I'm theoretically on my last taper to zero it could go on for months which I'm absolutely fine with. It will finish when PMR is ready to finish. Not planning on leaving the forum if and when the zero happens, hopefully my experiences will/maybe helpful to others who end up with something they have probably never heard of.
Hi Beebo8, I've been clear of steroids since jan 2022, having had GCA diagnosed and treated since 2019. I still have problems with fatigue, low energy and muscle stiffness, sometimes needing to use a walking stick when hip and knee joints play up. Not sure how much exercise is good for me, do Pilates 2x week and pool exercises and am about to consult a specialist masseuse to check out condition of muscles etc. I'm however 81 so not sure what is inevitable Anno Domini.Good luck and patience with your recovery.
Thankfully, yes. Free from symptoms for 3 years now.Followed the slow reduction recommended by experienced advisers on this site.
Was frightened it was returning as headaches returned with a covid-like virus but didn't get severe and they receded.
Very best wishes .
Update on my GCA journey
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