From Gillian

Hello Audrey, there is a member on this forum who has been diagnosed with GCA of her chest. For weeks she felt very very ill, no pain, no stiffness. She had many many tests done and they all came back clear. However, still feeling very very ill the dr's did some sort of scan and her chest lit up like a Christmas tree. She was immediately diagnosed with GCA put on preds and she within no time at all felt well again!

remember the numerous symptoms of GCA such as jaw pain, ear ache, tender scalp, blurred vision, headaches, etc, etc are nothing more than a list of symptoms and like any illness a sufferer may only experience 1 or 2 of the symptoms or indeed all the symptoms. 

Gillian has said that she experienced many of the GCA symptoms but she hasn't named them and I assume that's how her clinician diagnosed GCA.

i only have PMR (thank god) and when I read members stories on this forum I often think, crikey, didn't I get off lightly! As I didn't experience many of the symptoms they had and now on preds I experience very little pain.

that's why GCA and PMR is sometimes very difficult to diagnose, we are all different and experience the symptoms of the conditions differently. Hope that's of help. Regards, christina 

The ESR and CRP were both raised and I had malaise and tenderness in the left temple and eye and a monster one sided headache

I only heard of PMR recently and I have no symptoms like that

Hello gillian, yes not everyone that gets GCA will get PMR or visa versa. But as I said visit your GP and see if they'll refer you to an allergy clinic. All the best, christina 

The biopsy (bilateral in my case) is a brutal way to get a diagnosis and if it comes back negative a total waste of time. All that pain an anguish for nothing

Hello Audrey, did you have GCA symptoms otherwise why did your rheumatologist suggest a biopsy?

we are all fearful that we could develop GCA alongside our PMR but we know the symptoms, we must be vigilant of them but we mustn't live in fear otherwise we are not living! I'm glad you are so tired of worrying about this because I was like that too. When I was diagnosed with PMR at the age of 52 I cried and I cried. All I kept thinking about was how bleak my future was. Would I live to see my 60th birthday, would I develop some other even worse auto immune condition, I just lived in fear of dying, then one morning I woke and I was so tired of living in fear that I simply said to myself what will be will be. I have come to terms with this condition, I have it, hell i don't want it, but there ain't a thing I can do about it so I have to live with it. I am in a much better place now, mentally and like all sufferers I pray I don't get GCA and I hope that I fully recover from PMR. I'm now on 8mgs after being diagnosed in December 2013.

if you are worried about your sore throat go and visit your GP hopefully they will put your mind at rest.

but going back to the biopsy question, sometimes the result is negative because the section of value removed doesn't contain any giant cells, however, if the patient exhibits many of the symptoms and following preds the symptoms improve then GCA was the correct diagnosis. All the best, christina 

A biopsy is only 50% likely to find giant cells. There is a chance of having another biopsy, on the other side. As the treatment is the same, whether the biopsy is a success (finding giant cells) or not, I see no reason to have them, so I refused. GCA was misdiagnosed by me GP and I was reduced from 15mg of prednisolone by 2.5mg every 2 weeks until I was screaming with the pain on both sides of my head and lost some of my vision and hearing. The consultant was aggressive and rude and covered up for the GP's inadequacies in my treatment. Who would let such insane people operate on temporal arteries? I have spoken to doctors who have told me that

this is a dangerous and rare diagnostic operation - it might have delayed wound healing or in some way compromise the integrity of the blood supply to be brain, and they would never suggest it as the whole idea is to prevent damage to this artery, not inflict it.

Hi misdiagnose.  I've had a temporal artery biopsy, which was a very interesting experience!   From what I understand, there are many arteries that branch off from three major ones that supply blood to many areas of our head, not just the brain.  The temporal artery that can be seen is on the outside of our skull and mainly supplies blood to our scalp and is the easiest to take a biopsy from.  Before having this procedure done, I was so worried that blood would stop flowing to my brain during it and I'd pass out, but of course, this wouldn't be the case, as it doesn't supply the brain with blood.  It did take near six months to heal properly though and like everyone else, I still fear GCA developing, despite having had a negative result and there is still a bit of a question mark hanging over if I have it or not.

 

Hello Suesing, There is a huge emphasis on having the biopsy. If the treatment is the same, either way, with a positive or negative result (the positive being for GCA, the negative being a question mark) I see no reason for them to do it. The medical profession do a huge number of unnecessary procedures. Not only did they remove my tonsils and adenoids, but they also removed my wisdom teeth, to exclude any later in life wisdom tooth problems (there was nothing wrong with them). In fact, when the local private hospital had no patients, and I had no reason to continue my private health insurance due to good health, they told me I had abnormal cells and needed cryosurgery to my cervix, I always wondered whether they had nothing to do that day. Usually, a competent doctor can tell if they feel the temporal artery whether it is inflamed and not working properly. Looking for giant cells is like looking for a needle in a haystack. All the emphasis is placed on the temporal artery, yet other medium and large arteries are totally ignored.

The reason for doing the biopsy is that if it is positive it is 100% sure - and for that 50% of patients for whom it is positive there will be no argument in the future as to whether it was GCA or not that they had. For the rest, if the symptoms are fairly conclusive then they will be continued on pred because not to do so and then have the patient go blind would be awful. Whatever the side effects of pred they aren't as bad as blindness.

It is NOT as simple as feeling for a temporal arterial pulse.

In the past the only way to confirm GCA was the biopsy - there was no PET/CT scan, no other option. If doing a TAB saves half of the patients sight that is pretty good - it's a darn sight better than the number to treat ratio with statins. And the only easily available artery of the sort that can develop GCA is the temporal artery - it must have an elastic layer to the artery wall, not all do. That also meant that where a patient had GCA affecting the large arteries in the thorax it might not be found - unless there was a reason to do open chest surgery and the option to take a bit of a far larger artery because of heart surgery. It would be found at post mortem - which I think we are all agreed is a bit late. 

Eileen,doctors do not usually gamble on whether a patient has GCA or not. If they have raised inflammatory markers, the symptoms of GCA and a fluttering pulse, this is usually good enough to give a high dose of pred to protect the eyesight. Hearing can also be affected, hair can fall out, it is not just sight which is at risk but the overall integrity of the arteries and maintaining them in good condition. I din't say it was just a case of feeling the pulse. I suggested that a fluttering temple artery pulse, and everything else combined, can give a clinical picture that causes sufficient concern to give a high dose. Whether GCA is confirmed or not, if the clinical picture is of GCA, the higher dose is given. So wht is the point of the biopsy? There is never any arguement, except whether a biopsy is mandatory if a patient has symptoms. It should be a negotiated choice. Patients should be informed about how many the clinician has performed and the success and failure rate. I wouldn't bet on a 50-50 horse though some doctors are prepared to, unless it is one of their family members! 

If on 30 mg of pred a day for PMR is there still a chance of developing GCA?

 

I explained the primary reason for the biopsy. And to find a better way of diagnosing GCA you have to know that what the patient had was definitely GCA - you take a patient with a positive biopsy and look at the results of using other forms of testing.to see if they match accurate identification. If you have a population of 100% certain cases then you can find another, less invasive way of also being sure,

You seem to think only GCA causes these symptoms - that is far from the case and part of the problem. The symptoms vary widely, add to that the fact that about 20% of those patients with GCA have normal inflammatory markers and you have a problem identifying which particular cause is present: migraine, cluster headaches, stroke and others. Some patients have almost no symptoms before loss of vision.

It is unlikely at that dose but it is always possible - it depends on a lot of things. But most experts feel that 30mg will prevent all but the most severe cases - it depends where the inflammation is situated to some extent. A lot of GCA is present in large blood vessels and 30mg there is likely to be enough. Severe swelling in much smaller arteries is more likely to block the blood supply but again 30mg will protect most cases. Biology/medicine is never a 100% certainty whatever which way!

I agree. I know a man who did lose sight without a headache. His biopsy didn't show gaint cells but his CRP was extremely high (I don't remember the figure he gave me). When someone attends A & E decisions need to be made about whether to prescribe prednisolone and how much. This is why signs and symptoms are important, such as palpating the temple artery and talking to the patient. Decisions about diagnosis and treatment are made before tests, such a blood workup and biopsy. Before the days of high tech, doctors were able to treat patients and still do treat patients for a large number of serious illnesses without the need for 'evidence'. The treatment for GCA is the same, whether they find 'evidence' or not because signs and symptoms are still valid. It is scandalous that patients with GCA are not being diagnosed because they have not had a biopsy and the giant cells have not been found.