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PMRGCAuk
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Fingers Crossed

Hello everyone🤗

I can't tell you how much I appreciate all of your posts. I was diagnosed with PMR in July of 2017. Just had temporal biopsy yesterday as I've had headache with jaw pain... keeping my fingers crossed that I don't have GCA.

I am so thankful to find others with this disease and can compare notes and have others to talk to who are experiencing the same things. I don't feel like I'm the only one who has this with no support.

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Hi, The thing you need to bear in mind, I am afraid, is that the temporal biopsy can only tell you that you do have temporal Arteritis in the particular portion of artery that they look at. It cannot give you the all clear for GCA in general. This is my understanding of the situation, in any case.. I would be on high alert for any eye symptoms irrespective of the test results. If I experienced eye symptoms I would expect it to be treated as a medical emergency, like a stroke for instance.

Everything crossed that you do not have it lurking anywhere.

I had unexplained jaw symptoms a couple of years before my PMR diagnosis, it seemed to be more indigestion related, all cardiology tests were normal. As for headache, well I am never completely free from one.

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How would you know if you had a GCA related headache - I get very severe headaches - but always have and like yourself there's always one lurking somewhere. How would you even know then if you had a GCA related one? Thank you.

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They generally say "a new type of headache" - when it is the sort you have always had it probably is OK. Especially if they go away with ordinary painkillers. GCA doesn't.

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Hi power walk, my Rheumie suggested that my head would be tender to the touch, which it isn’t. I love a head massage. It concerns me too, particularly the odd stab in the temple area.

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Carol, yes fingers crossed for good results, but the symptoms do sound very GCA-like, especially if the jaw pain you describe occurs mainly on chewing. However, as Jane has pointed out, unfortunately a clear TAB result does not necessarily mean you don’t have GCA. They are looking for large cells and it is quite possible for those large cells to escape the tiny portion of artery removed. At least where large cells are found, it provides absolute confirmation of GCA and rules out queries surrounding this in the future. Good luck, PMR is quite enough to cope with!

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I had a sense of relief when I received the news that my biopsy was positive. I wasn’t happy with the diagnosis, but I was glad to know for certain. It allowed my doc and I to know what the next course of action would be. No guess-work. My hope for you is that the results you get are correct.

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Hi,

As others have said a negative diagnosis from a TAB isn’t necessarily correct, so it can still leave you worrying whereas a positive diagnosis is just that - and you know where you are.

There are many on here who have got through GCA relatively unscathed, so don’t be too concerned if the diagnosis is positive. The important thing is you know you’ve got it, and are being treated accordingly.

Problems usually only occur before diagnosis and treatment - and even then we live to tell the tale. There are a lot worse illnesses to have.

Take care, and keep comparing notes📝

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Hi there carol, another Carol here. Welcome. I was diagnosed with pmr March 2015 then GCA just 3 months later despite a negative biopsy. I had too many other symptoms for it to be ignored. When first told to look out for GCA symptoms I mentioned that I had had horrendous headaches months before the pmr was diagnosed but I was told to report only new symptoms (not the best advice), which eventually appeared in the form of jaw claudication and hearing problems and strange eyes. So if you have GCA lets hope they take a bit that has it in it. All the best cc 🤗

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I don't see that anyone here has pointed out that if you were diagnosed with PMR in July and have been on pred since then the chances of a positive TAB are much diminished. It is very important that the symptoms be taken seriously and treated. Symptoms always trump the biopsy results as even when done before or very soon after starting pred there can, as the others pointed out, still be a negative result if the part biopsied happens not to contain any of the large cells. The benefit of a positive result is that no one can come back later and deny the GCA diagnosis.

Good luck!

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