GCA plus Large Vessel Involvement.

I have always been careful not to frighten new people with all the in's and out's of GCA.

I am asking you to read the following and then check it out for yourself.

I have asked some questions of some medics I know, after my two experiences of (Atrial Fibrillation) A/F and will be asking more in the future. I now have A/F. I cannot be sure that I would not have had A/F if I had never had GCA, but on re-reading everything that has been published and verified I could not say, in all honesty, that I think that GCA had nothing to do with it.

One of the replies I received read as follows:

"A/F is common in the age group which is also affected by GCA. Hence

difficult to be certain of the link to GCA"..

However, steroids do increase the strain on the heart due to fluid

overload & BP. There may be a direct effect on the heart rate depending

on the dose of the steroids.

I had asked the question as on the 82 listed side effects, albeit classed as 'Rare', 5 were related to the Heart and included A/F.

I then checked out our website and under Useful Medical Information re-read the latest Guidelines on GCA and sure enough I had remembered correctly a couple of things I had noticed but not really taken in.

Diagnosis - includes Chest Radiographs (I had never had one) as my GCA was occurred before the Guidelines were published.

Complications of GCA

LATE: Inflammatory aorta-arteritis

- development of aortic aneurysm - aortic dissection.

A paragraph on its own headed "What are the areas the present guidelines do not cover?".

Other Vasculitides, including TA due to other causes, other CTD's and other inflammatory muscle diseases.

The document, in its entirety, can be found our our website,pmr-gca-northeast.co.uk , the BSR website and the NHS website and I would urge all GCA patients to read it in full. I know it is not easy reading, but sometimes knowledge is power.

Extract from the BSR & BHPR Guidelines for the Management of Giant Cell Arteritis (GCA

These guidelines were prepared by a working group consisting of members of the rheumatology and general practice communities, together with patient representatives. They are now officially accepted as BSR guidelines.

And now for the Capital Letters bit:

IMAGING.

PATIENTS SHOULD HAVE CHEST RADIOGRAPHS EVERY TWO YEARS TO MONITOR AORTIC ANEURYSM.

IN SUSPECTED LARGE-VESSEL GCA, THIS MAY NEED SUPPLEMENTATION WITH ECHOCARDIGRAPHY, PET, MRI/CT AS APPROPRIATE.

I just wish I had paid more attention when I first read those guidelines, taken it all in, printed them off and insisted by waiving these guidelines at my Medics.

I don't blame them, they only came out two or three years ago and I should have known better.

I can only pass this on to others with GCA and perhaps what has happened to me and some others may be of help you in your journey through GCA.