Newbie - are my GCA issues familiar?!

[Kafkaontheshore]

Hi all,

I’m new here and am glad to join the forum. I’ve been diagnosed with GCA (abdominal and thoracic aorta, bilateral subclavian and carotid arteries) for two months now. Tapering Pred but just had to go back up from 20mgs daily to 30mgs as CRP went up and I felt worse. Been taking 15mgs Methotrexate weekly for six weeks so probably not helping yet

I can’t work as so very fatigued like I’ve never experienced before. I can do like an hours light task then need to rest. Previously I was very active and pretty fit. Now walking is very limited and my quality of life has plummeted. Is this normal?

Also I have blood pressure problems with a drop when I stand and numbness in fingers and weak legs. Sorry to list symptoms/moan like this. I’d love to know if being so debilitated is a common experience or not.

Thanks in advance

[PMRpro Ambassador]

Fatigue is a common factor in almost all autoimmune disease - and you have extensive systemic disease, no wonder you feel unwell. It is known that the underlying cause of GCA is still active after 6 months of high dose pred management, that's doses above 20mg. You have been reduced pretty quickly.

healthunlocked.com/pmrgcauk......

The links here may help you get your head around it all.

Which fingers are numb?

[Kafkaontheshore in reply to PMRpro]

Hi and thanks for your quick response. I get numbness in the fingers of both hands but it’s usually worse in the left.

Can GCA cause postural hypotension do you know? I also get palpitations and a pulsating neck/ head at times. Lying down helps.

[PMRpro Ambassador in reply to Kafkaontheshore]

It may be worth getting the palpitations checked out - I have atrial fibrillation which was most likely caused by the autoimmune part of PMR.

Have you checked the change in BP when moving from sitting to standing? I can't find anything that links them - but there are things that are differential diagnoses for GCA that can cause it.

[Kafkaontheshore in reply to PMRpro]

I have had cardiac ablation for AF before but this feels different. I have a systolic drop of over 20mmgs/Hg from lying to standing. I’m actually having cardiac tests next week which I hope will help me understand if it is cardiac or GCA. Or maybe a mixture of both I guess!!

Thanks again

[DorsetLady PMRGCAuk volunteer]

You might like to have a look through this - it does cover both GCA and PMR - but it might help -

healthunlocked.com/pmrgcauk...

This might also give a bit more info on Vasculitis - and GCA -

vasculitis.org.uk/about-vas...

[Kafkaontheshore in reply to DorsetLady]

Wow thank you very much for this. Very helpful. I am good at gathering information but it’s understanding what it means for people living with the condition I have been lacking. You give helpful advice on managing fatigue etc. I have been worrying that I need to push myself more, although my family have said I shouldn’t, so it’s helpful to know I have to go with it more and pace myself.

Thanks so much

[DorsetLady PMRGCAuk volunteer in reply to Kafkaontheshore]

Hope it helps, that was my aim.

Been there, done it, got the T-shirt - personal experience - something most experts haven’t!

[sondya]

It's a hell of a journey. Great advice from forum members helped me. I was diagnosed with GCA Dec 2016, had a positive biopsy five days later. Final check up Aug 2018.

That over, got hit with PMR. Started final tapering a week ago, ending in December.

Fatigue is constant. I don't fight it.

Will still be monitored by the hospital rheumatologist.

All the best - cheers from New Zealand.

[Kafkaontheshore in reply to sondya]

Thank you for this. Yes I think I’m learning that I have to go with it and not fight the fatigue as you say. It’s hard when I was so active and loved long hilly walks. Same for us all I’m sure.

I had it the other way around, PMR since 2017 and now GCA. Good luck with your tapering in NZ 😃👍

[Frewen1 in reply to Kafkaontheshore]

Hi, I’m a recent member/GCA patient...just about to reduce to 17.5 pred tomorrow, from 60 , months ago. Yes to muzziness, weak limbs and hands, blurred vision. And overflow incontinence! Which I was beginning to wonder whether was in fact attributable to Amlodipene instead (as no empirical research connects steroids to this particular indignity, but blood pressure drugs have plenty of evidence) ... but very unclear. Thanks always to helpful people here.

Karen

[Kafkaontheshore in reply to Frewen1]

Thank you. On a good note my muzzy head has stopped and I’m not needing an afternoon sleep so much so things do change for the positive as well which is a relief. Good luck with your tapering. A very inexact science me thinks!! 😁

[Jackoh]

Sorry that you are now going through GCA. You’ve been given some excellent advice and reading. Don’t fight it or try to push yourself- it really from my own experience doesn’t work. Just try to “ go with the flow”- easy to say but not always easy to practice. Xx💐

[Kafkaontheshore in reply to Jackoh]

Exactly. Normally very busy and active. I have been off work for three months now which I can’t believe but fatigue is mental as well as physical. I am learning and it is so helpful hearing from you all who have been/are going through it.

Thank you 👍