I.ve been diagnosed with GCA since. March, but despite swinging up and down with steroids the symptoms remained. Then one morning I woke with a full blown migraine that I have never had before and realized that I had eaten cheese the night before and before the first onset of symptoms back in March. The biopsy was negative, I don't have joint pain or jaw pain and my scalp isn't tender. ? Dairy allergy. I'd like you'd thoughts
I don't understand, Gillian.
You state you have been diagnosed with GCA. However, if the biopsy was nagative and you don't have joint or jaw pain and your scalp isn't tender how did they determine your condition. Was it primarily from the results of the SED and CRP?
I'm new to this myself and trying to understand.
Audrey
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
Gillian, if the preds have been of very little help since diagnosis and now you believe there could possibly be a link to your problems with cheese get back to your Dr and tell them. They could refer you to an allergy clinic and if your hunch is right not only could you be weaned off steriods quicker but you could be well soon simply by not eating cheese.
regards, christina
Hi Christina,
i thought the biopsy was a sure way to determine GCA. Since Gillian's was negative I suppose that is not so. Then why do they bother to do it?
i was in the hospital two weeks ago and my rheumatologist suggested it but the vascular surgeon suggested against the biopsy because of lack of evidence. He said, once the biopsy is done and it's negative there is no chance of having another one.
i am always fearful that my PMR will develop into GCA. I have had a very, very slight sore throat for two weeks. It is much improved but sometimes when I swollow I can feel it in my ear. Since it's improved I didn't go to doctor but I still worry. I'm so tired of worrying about this.
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
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
I only heard of PMR recently and I have no symptoms like that
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
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
Gillian, Why did you swing up and down with steroids and what dose were you started on in March? Did you diagnose the migraine yourself? Are you sure it was migraine and not an inflamed temporal artery? Many people have migraines without ever eating cheese. I had migraines every month around the time of menstration and I don't eat cheese. Cheese does not trigger Giant Cell Arteritis. If you only have a diary allergy, your doctor has misdiagnosed you and put you on a complex drug treatment. If you were diagnosed with GCA in March, and have been up and down since, you must still be on a huge dosage. Can you explain please?
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 Gilian - It was me that "lit up like a Christmas tree"!!
I would have thought that if you do have GCA the steroids should have got the symptoms under control pretty much within days - they say that is one of the definites when diagnosing - they think "this is GCA" - they give a large dose of steroids - and if you feel a great improvement it seems to be confirmation of the illness.
Are you thinking dairy allergy rather than GCA?
Probably worth having a chat about it with your gp - what symptoms do you have?
Waiting to get a diagnosis is tiresome - once you have a diagnosis and some meds that do the trick you feel ike there is a light at the end of the tunnel - finally you are on the road to recovery - hope you get on the right road soon.
I started on 20mg which did relieve most of the symptoms but not completely. It was reduced to 15 mg and the symptoms came back so it went up again, then down as far as 18mg and again more symptoms so up again. Currently I'm on 19mg for 4 weeks. The cheese thing may be just a coincidence I know. I'm 67 so it's not related to a menstrual cycle. My mother suffered from food allergies (some imagined I think) and had migraines and couldn't eat cheese or drink coffee. What I had was a massive headache with vomiting, if not migraine - what else? I've cut out dairy now for the past 3 days and the pain in my temple has gone, but it does disappear for 2 or 3 days sometimes so we'll see. I'll eat a yoghurt and see what happens, then I might have something concrete to tell my GP. Or not
I'm pretty certain it's GCA but As it is an autoimmune disease, I wonder whether a food allergy could trigger it. I have read that dairy can cause inflammation of the cardiovascular system. It's not like lactose intolerance that affects the gastro intestinal tract. It makes the body fight against itself as if it were a foreign body if you know what I mean. You read a lot and it's hard to work out and I think the docs are guessing nost of the time too. Perhaps, like us, they're googling the answers too most of the time. I've given up dairy for a while so we'll see.
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.
I have just discovered that migraine headaches can occue with Giant Cell Arteritis Gillian, which is probably why it was flagged up.
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.
It's more likely that the autoimmune disorder is casing the food allergy than the other way round. I am allergic to something in wheat, not gluten but something else. It started about the same time as the PMR symptoms and is felt to be another manifestation of the problem.