Deciding if it could be GCA
Posted , 5 users are following.
I am presently on 7mg, and worry if GCA is starting: the dull pain I get is not at the sides of my eyes but about an inch above and slightly back. I do not have other indicators, such as jaw pain or sore head to touch, and am unsure whether all symtoms are likely to be present or only one. My GP seems to think I am OK- any advice as to whether the temple pain in GCA is by the sides of one's glasses or an inch or two above this?? I Thanks.
1 like, 12 replies
pat38625 Herbo
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MrsO-UK_Surrey Herbo
Posted
If you had raised markers of inflammation in your blood at PMR diagnosis, then it is highly likely that you would also have raised markers in the case of GCA, especially the CRP.
If the head pain is a new symptom which you haven't experienced before then you should remain alert for any visual disturbances which should then be investigated immediately. Meanwhile, perhaps you can get a good optician, or better still an ophthalmologist, to check your eyes for any sign of problems. Also you can check for a pulse at the temple area.
constance.de MrsO-UK_Surrey
Posted
Mrs O, I have a question re GCA. It's probably been answered before, but I can't find it! Can GCA creep in or is it always a "wham" thing? I have a shooting pain through my right temple (very occasionally also on the left), then slight headache. The only visual thing is, when I am reading long texts part of the writing is paler. I have had cataracts removed on both eyes - twice!! This is different somehow.. No other symptoms. I think one can become a bit paranoid about GCA, sorry if I'm one if these.
EileenH constance.de
Posted
You are right, it is easy to get paranoid but it is understandable when you know doctors dismiss your fears out of hand quite often. If you think you aren't seeing "normally", get an optometrist to check your retina. If your eyes are affected then they can see changes where the optic nerve joins the back of the eye. There are other things that can cause it too - not just GCA.
constance.de EileenH
Posted
Another thing: As I mentioned to you some time ago I have reduced Pred to 6 mgs. Pain has decreased, but tiredness has INCREASED. Is this normal when decreasing? Sorry if I am being a pain in the ...........!
Constance
EileenH constance.de
Posted
Now you are down to this level your adrenal glands have to start to produce cortisol again. The production line is governed by a very complex set of hormones and other substances and it takes quite some time for that to settle down - it isn't that things have stopped working, the overall feedback system takes times to get to the right setting and swings about a bit.
When you are low on natural corticosteroid from the adrenal glands one of the symptoms is fatigue. Don't rush to reduce again, that would just make the tiredness worse. If it gets worse or you start to feel ill as opposed to just tired check with your doctor. You may need to have an adrenal function test - it can be done while still on pred, it just has to be interpreted differently. If your adrenals are producing cortisol then it just means slowing the reduction and being patient or your doctor may use another short-acting corticosteroid to provide the corticosteroid you need and allow you to wean yourself off the pred. If they aren't working then you will probably need to stay on a low dose of pred. Nefret on here is in that situation - 5mg for life.
MrsO-UK_Surrey constance.de
Posted
Now, apologies to those who have read this story before and may now find it boring, but it just might help anyone 'looking in' for the first time and wondering about their symptoms.
Also, do remember that my symptoms were probably extreme due to the fact that I had spent a year with undiagnosed, therefore untreated, PMR - as much as we all hate the prospect of taking steroids, leaving untreated inflammation coursing through our bodies can do much more harm and result in far more serious consequences than the steroids themselves.
No need for apologies about feeling "paranoid about GCA" - that is quite understandable. But rather than worry about it do always get any new suspect symptoms checked out. The "shooting pain" you describe and slight headache may simply be a side effect of the steroids, but remain alert to any problems with your vision and, if in doubt, get a good optician or ophthalmologist to examine the back of your eyes....and you, yourself, can check for a pulse in the temple area.
Also, everyone, do bear in mind that any sudden problems with vision should be checked immediately, and not just for GCA. One member of my PMR/GCA support group, recently in remission from PMR, contacted me about a sudden problem with the peripheral vision in one of her eyes. I pointed her immediately to A&E where a detached retina was diagnosed. Another member with a sudden strange visual experience, also despatched off to A&E, was found to have had a TIA. Our son awoke one morning, noticed a problem with his vision, rang the optician and made an appointment for a few days later - he had suffered a 'silent' stroke in his sleep. His peripheral vision is permanently affected whereas if he had realised the urgency of his problem and got an immediate diagnosis and blood thinning treatment in earlier, his vision may have been restored to normal. So no-one should ever ignore any eye problems.
I've just realised if what I've written above comes over as somewhat depressing, I'm really sorry - it is really just meant to be helpful!
A very happy New Year to all in this group, and to those of you still struggling with this frustrating condition, do know that you WILL get better. It is at least an illness that isn't life-threatening, just life-changing for a while.
EileenH MrsO-UK_Surrey
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MrsO-UK_Surrey EileenH
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constance.de EileenH
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tina-uk_cwall Herbo
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EileenH Herbo
Posted
I would say that was a typical site of the "sore temple" pain - can you see the temporal arteries which run about where you are describing? If GCA is affecting them they are often swollen but it is difficult to find the pulse there. However, if you develop any visual signs, including double vision which is often the first, you could ask at an optician if the optometrist could examine the back of your eyes.