Newbie who is a bit worried!

[Mandrose]

Hi all

I'm 53 & mid November had a terrible pain in my eye followed by a severe headache. Since then everything has escalated due to my blood test results being abnormal - 3 days in hospital, steroids for a week together with antibiotics for a sinus infection, ct scan, MRI & then a temporal lobe biopsy last Tuesday. To say I'm a bit scared is an understatement! I've been looking at posts on here (very informative & reassuring) but the one thing that baffles me is a lot of people say if the biopsy is negative it doesn't mean you haven't got GCA & a negative response seems the most common, which worries me! Has anyone had a positive biopsy?

Mandrose (a very anxious possible GCA)

[SheffieldJane]

The only expertise I have gained is through this website. I think you can get a negative biopsy result because they can do a biopsy, inadvertently, on an unaffected portion of the temporal artery, also Prednisolone can, in some cases reduce inflammation to such an extent that a false result is given. You are in safe hands though and the steroids save your sight. I am glad for your sake that they caught this early, some sufferers don't get such a clear warning. Stick with this forum, I feel as if it has held my hand since diagnosis.

More qualified people will come forward to answer your questions. We are all familiar with that scared feeling.

Of course I wish you a negative result that you can trust. Your symptom picture will be unclear because of your sinus infection. But you are alert and armed with facts and are being taken very seriously . Wishing you all the luck.

[Woodiesmum]

Hi Hun x you have at least done everything right x I had to fight for biopsy and mine came back negative x but the rheumy I am under put me on a large dose of steroids and within the two weeks the difference was incredible x my bloods were all lie too x don't read to much into that x also the age thing I am 52 and I have been fighting for diagnosis for at least 4 yrs and I do believe it's been there a lot longer x wait till alll results are back and I'd all negative ask for the two course and if it's gca you will feel a huge difference x I have pmr as well x please let us know how you get in Hun x and if anyone can help here they will xx take care my friend x

[DevonMichael]

The medical activity you have endured must be disconcerting. As has already been well explained the biopsy can only really confirm but not disprove. In my own case it was the collection of symptoms, individually each could be dismissed but collectively painted the picture of GCA. In hindsight the most telling was tenderness to my scalp and the jaw pain on chewing. I did not have to consider biopsy due to getting "full set" of symptoms in a short period, coupled with confirming inflammation blood tests including an ESR reading of 124.

Good luck I hope it is not GCA for you at your comparative young age!

[PMRpro Ambassador]

GCA should be a clinical diagnosis (based on symptoms plus response to steroids) - and the temporal artery biopsy should really be just part of the overall picture because it isn't 100% reliable as you've seen. When it is positive it is 100% certain that it is GCA - and that means the patient can be included in trials for GCA and there is never an argument about whether you had GCA in the future. that is probably the biggest advantage!

But yes, there are plenty of people who HAVE had positive biopsies!

[granny-b]

My pre diagnosis symptoms were horrific headaches that weren't helped by painkillers and jaw aches. My bloods turned out to be high but you can't feel that!. And then after high dose steroids for 8 days they did a biopsy. It was positive. This is sometimes negative if, by the time they get around to it, the steroids have suppressed the signs.

As PMRpro says my positive biopsy has opened up excellent care from a rheumy who has a special interest in GCA and just received my third invitation to research.

I am happy to do this research on behalf of those who suffer from GCA whether they have a positive biopsy or not.

The main plus for starting high dose steroids asap for a suspected GCA is to save the sight and I would go for that choice over a positive biopsy every time.

Take care. You will get support and advice on this site. GCA isn't a great thing to have but there are things that could be worse.

[Mandrose]

Thank you so much for your replies & support. I was brought up to grin & bear it, which has left me with a problem of saying how I really feel! If I say something hurts I then panic about whether it actually does or if I'm imagining it.

I had a bad sinus infection just after my eye pain & headache, so wouldn't that have raised the levels in my blood & caused the symptoms? some other things I wonder about are my scalp feels itchy in places but is sore when I scratch. My shoulders & hips are tender but more on the bone rather than in the joint & the bone on my wrist running down from my little finger is tender too.

I think this is my main worry if the biopsy is negative, as I'm sure my symptoms could relate to other things and I'm scared I'll be diagnosed incorrectly.

Sorry but I seem to get into bed & start fretting about it! I'm so pleased I found this forum, as at least I can get it off my chest.

[PMRpro Ambassador in reply to Mandrose]

You have told the doctors all you have told us? Our generation did get told to grin and bear it - but doctors don't know unless you tell them! What you describe is all quite usual in PMR or GCA - especially the sore scalp sensation for GCA. If the TAB is negative they will make the diagnosis on the symptoms so you MUST tell them everything.

[Mandrose in reply to PMRpro]

Thank you so much for your reply I haven't had a proper appointment yet (it's on 05/01) & I honestly can't remember what I told the doctor when I was in hospital. I have had an MRI & biopsy since, so I must have presented with enough symptoms, although at that time I had never heard of GCA before! To make sure I say everything going on at the moment, I've decided to write it all down and go armed with a list - I'm hoping that will stop me going into a panic If not GCA, I'm hoping it will give enough clues to find out if there is another problem! Many thanks again for your advise.