Any one under the age of 50 on here with gca

[mabs786]

I was just wandering if anyone under the age of 50 on this site has gca. I am 41 and have all the symptoms except the visual loss of gca but my gp wont diagnose me with gca.

[Runrig01]

Hi Mabs, I began by having symptoms of PMR which my GP suspected from the start, I had just turned 47. He referred me to a Rheumy who disputed the diagnosis till 14 months later. After months of suffering and numerous tests she agreed I have "Atypical PMR". 3 months after starting steroids at 15mgs the symptoms of GCA started. That was March 2013, and to this day no Rheumatogist will diagnose GCA, even though a Neurologist says it is very possible all my symptoms are GCA. I am currently looking for a vasculitis specialist with an open mind. I hope your journey to diagnosis is not as troublesome as mine. If you find anyone who will diagnose under 50 let me know.

There was a 37 year old welsh man who sadly died 2 year ago after complaining of temple headaches. He was diagnosed as cluster headaches, but died of a stroke. His post mortem found it was due to GCA. It is rare but it does happen. I do not mean to frighten you, are you on any steroids? At the first sign of vision trouble please go straight to A& E. Take Care Runrig x

[mabs786 in reply to Runrig01]

Hi thankyou for your reply for the last 8 months I've had really bad headaches and temple pain alongside side the classic symptoms of pmr. And my inflammatory markers have been raised above normal levels I was sent to rumy last October but at that time only had the pmr symptoms the diagnosed cfs and discharged me. Then went to nuro he diagnosed migraines even though by this time all my symptoms pointed to gca when I mentioned this he laughed at me simply cos of my age and no visual problems. My gp suspects gca and stupidly sent me to ENT for a biopsy of the temporal artery the doctor was just dumfound as to why she had done that even though i had asked her to refer me back to rumy i seem to be going round i circles my headaches are getting worse by the day just so fed up with these doctors not listening. Sorry for rambling on xx

[Celtic PMRGCAuk volunteer]

Mabs, as Runrig has said, people under the age of 50 have been diagnosed with GCA in the past, and I have heard of a young lad in his teens diagnosed with Temporal Arteritis. If your GP won't diagnose you with GCA, I hope he hasn't just fobbed you off to struggle on your own but has suggested what else it might be and at least referred you for further investigative tests. It would be helpful to know what symptoms you are experiencing. Certainly, if you suddenly experience any problems at all with your vision, such as pain or blurring in your eyes, I agree with Runrig, go straight to A&E. If you haven't already done so, arrange an appointment with a good ophthalmologist to have the back of your eyes examined.

[polkadotcom]

Agree entirely with Celtic, would you doctor be willing to read up a little? If so you could take the guidelines for both PMR and GCA and see if that helps. Otherwise, repeat that if you have any visual problems, get to your nearest A & E with all speed.

[mabs786 in reply to polkadotcom]

I get the feeling my doctor hasn't come across this before hence the reason for referring me to ENT for a biopsy my next visit with her is on the 29th so i will have a very open discussion with her about this in the mean time I am trying to gatheras much info as I can about the condition especially with regaregards to age factor as this seems to be the main obstacle for me and the fact that not all patients suffer vision problems.

[PMRpro Ambassador in reply to mabs786]

I fail to understand why, when they haven't heard of something they can't google it! My GP in the UK did that and I never felt it was admitting ignorance - after all you get the medical papers via google too when you search properly, that's how I find them

The other thing I fail to get in your case is WHY ON EARTH ENT???? That shows an appalling level of knowledge - or lack of it.

You could go to an opticians and ask if the optometrist can examine the back of your eye to see if that is showing any signs of damage. They can do it and if my optician in Scotland found anything he would then write a letter for the person to take with them to A&E and he rang the rheumatologist or eye department to tell them they were on their way.

[polkadotcom]

That is quite right - I have GCA in the medium arteries and have never had any visual problems. I was diagnosed by symptoms and that is 8 years ago now.

If you google for the North-East PMRGCA Support Group (they are a charity in their own right) there is a lot of information on there which is put in layman's terms, so much easier to take in. Give it a try. They also have a forum which is more or less a virtual support group.

[mabs786 in reply to polkadotcom]

Thankyou will do that xx

[11caroline29]

I am 49 and was not long diagnosed with GCA and PMR. Symptoms since July 2013 but put down to my Fybromyalgia as a flare up by GP. Started seeing Neurologist since Jan 2014 re possible MS diagnosis but after MRI on April that was ruled out. Have had high Esr and Cpr bloods since Jan too. Out of the blue in June I got a phone call from a different neurologist to say he thinks I have GCA and need urgent Artery biopsy which was done in July. Been on 40mg of Pred for 4 weeks now. Terrible headaches blurred vision sweats and cant sleep. Had abnormal mammogram in the middle of all this too. My head is all over the place too. Been to optician last weekend who said he thinks I have optical nerve damage as to be expected with GCA. That worries me.