Aortic dissection

[Mumme]

Diagnosed with GCA in May 2016. Treated with prednisone 50mg gradually reduced to 3mg then had thoracic dissection in March 2017. Had open heart surgery in France to repair aorta and valve. After increase in steroids when back in UK now back to 3mg. Has anyone had similar experience with GCA?

[PMRpro Ambassador]

I haven't heard of anyone before so you may be a first on the forums. Was it "just" a dissection or was there an aneurysm as well? Were you on holiday when it happened?

That was a VERY fast reduction - I wonder if it had left some unmanaged aortic inflammation.

[Mumme in reply to PMRpro]

No aneurysm- on holiday . Reduction may have been too fast.

[PMRpro Ambassador in reply to Mumme]

I assume you have recovered well - not quite the reason for going on holiday though! My mother was taken ill on holiday - luckily as it happened, she wouldn't have made it to hospital in the UK. Having been sorted out at the time she then had the bypass done at home which is rather less dramatic.

[Mumme]

Surgery in France was excellent. Recovering well!

[PMRpro Ambassador in reply to Mumme]

So pleased. Do you speak French? Being ill somewhere you don't speak the lingo can be a bit unsettling!

[Mumme]

Yes- speak French ok?

[bert403]

I was diagnosed with GCA in Sept 2014. Started 60 mg...3 yrs to finally get to zero. Tapered very slow. After 4 months on high dose of pred my ascending aorta aneurysm started to develop. I also have two leaky valves which I had for many yrs. I am now a patient at the May Clinic in Jacksonville FL. I have appt on Tues for another CT scan and appt with surgeon to discuss surgery. Very scared, but has to be fixed. I hope you recover and get off prednisone. Glad your doing well from the surgery, I wish it was over already.

[PMRpro Ambassador in reply to bert403]

All the best - better the op than the potential outcome.

[Mumme]

You will be less scared when a decision is made. I had no problem with the surgery . I just wanted to get fit again . You just have to be positive which I think I am now. The actual GCA has been the hard bit!