GCA at 28 (update) : Hi everyone, I posted a... - PMRGCAuk

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GCA at 28 (update)

Tillywoods
Tillywoods

Hi everyone,

I posted a couple of months ago about how my GP thinks I have GCA and had started me on urgent treatment and I asked if anyone else knew of anyone my age to have this.

I have since seen a rheumatologist who said it seemed like it and who then referred me to an ophthalmologist (yesterday) who said he is sure I have GCA as EVERYTHING but my age points to it. I am 28... even the ophthalmologist said he has only ever read about people my age but never actually met anyone.

I am so freaked out tbh, so i am asking again, incase anyone didnt see my previous post...

Has anyone ever met anyone else my age with this condition?

Thank you <3 xxx

12 Replies
oldestnewest

Replied to your other thread. I don't blame you for feeling scared and freaked out, but the best thing is your symptoms are being taken seriously and you are getting treatment which could a) save your sight and b) save your life. There are better days ahead!

Tillywoods
Tillywoods in reply to HeronNS

i saw that HeronNS, i really appreciate you taking time to comment,. you are right, iv heard of people being ignored based on age so I guess i have been very lucky!

Thank you :) x

No, I have never actually met them, but one was 29 and the other 33.

Do not worry 'stuff happens' and luckily you were diagnosed quickly.

Tillywoods
Tillywoods in reply to jinasc

wow thank you! it makes me feel better to know there have actually been people my age with this, makes me feel less alone tbh x

jinasc
jinasc in reply to Tillywoods

Just remember you are not alone and you could take a look at this website www-pmr-gca-northeast.org.uk and also visit Patient.info and go to the PMR & GCA thread.

Someone is always here to answer questions - if we know the answer - or steer you in the right direction.

Tillywoods
Tillywoods in reply to jinasc

jinasc thank you so much for your help! xx

If you key "giant cell Arteritis at young age" into Google you will find several documented cases, some for people younger than you. It is rare, but not unknown. You are lucky to have such an aware GP

PMRpro
PMRproAmbassador

Thank you for coming back and telling us how you have fared. I'm so sorry that the GP's suspicion seems to be confirmed - but I AM pleased that you haven't been dismissed as "too young".

As jinasc says, there ARE others your age, just it is rare overall and none of us have met them! There are several reports in the medical literature - which far too many doctors seem totally unaware of and you have been very very lucky in your doctors being willing to think outside the box and treat you which has almost certainly saved your sight and possibly even your life.

Stick with us - for the benefit of the next young person. I do hope your doctors are going to write a paper/articel about you - because it is desperately needed for the education of doctors and benefit of others.

Tillywoods
Tillywoods in reply to PMRpro

thank you :)

I was thinking, after all the dust has settled and I am not so 'freaked out' and have come to terms with it all, i would like to do something to help younger people who may have been dismissed. Whether it is a blog or something, i don't know yet.

A few people have turned my attention to a story of a young man who had died as a result of GCA going undiagnosed! that is so scary :(

At the moment I am just trying to figure out what it all means, I need to make another appointment with my GP as I feel awful recently and think it might be due to my prednisolone dose being reduced.

I also suffer from emotional instability which just makes accepting and coping with all of this feel much harder, but really, everyone i have spoken to from here has been so wonderfully helpful and kind :) .

PMRpro
PMRproAmbassador in reply to Tillywoods

Yes, a blog would be a good start - young people will be able to relate well to that. But do stick around here, even if only looking in from time to time, because a lot of people of any age would now probably land up here as you did. Us being able to refer them to you and know you could help them in some way would be great.

You are in the UK - whereabouts?

Tillywoods
Tillywoods in reply to PMRpro

I definitely will stick around, i have found this place of great help and would love to be able to help anyone else :)

I am in Scotland, Ayrshire :) xx

PMRpro
PMRproAmbassador in reply to Tillywoods

Scotland has its own charity

pmrandgca.org.uk/

and has support groups in various places - they'll be old enough to be your gran/grandad but that isn't always bad - you can cheer them up. If you contact the charity they may know of other relatively young people. Later, you could perhaps do an article for the various charity websites - I'm sure the NE charity, based in Gateshead/Newcastle, would love to have an article from you.

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