Deciding if it could be GCA

Happy New Year to all!

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.

 

It can creep in - and GCA does not always involve visual effects. That only happens if it reaches the arteries that form blood supply to the optic nerve. Unfortunately GPs tend to think that the full blown thing must be present whereas the actual fact is that somewhere in the region of 20% have headache as the first thing they report - far more will develop a headache at a later point. In fact, it is the headache, jaw and scalp pain for example that are more common because of the particular arteries affected (the carotid and its branches), inclusion of the supply to the optic nerve is far less common. 

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.

Thanks, Eileen.  I have an appointment with my optometrist in five weeks, will see what he says.

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

PMR is merely an acronym for "Pain in My Rear" ...

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.

Constance, yes, as Eileen has said, GCA can just "creep in".  My very first (unusual) symptom was continuously biting the inside of my cheeks when talking.  I got a dentist to check for problems with my teeth but nothing sinister was found in my mouth, apart from all the red and sore areas where I had been biting.  I then developed extremely high blood pressure just AFTER commencing a drug to control raised BP.  The head pain quickly followed and became intense, followed by jaw pain on chewing, nausea and vomiting.  Three different GPs over just under 4 weeks diagnosed various conditions and variously prescribed drugs for allergy and nausea.  It was a very alert pharmacist who researched the symptoms of an illness I had experienced the previous year together with my new symptoms and came up with the possibility of something called Temporal Arteritis, saying it was linked to something called PMR!  The previous year I had been in agony and bedbound for several months, attending rheumy appointments by ambulance and wheelchair but remained without diagnosis and spontaneously recovered within just under a year.  A fourth GP finally gave me 40mg Pred and immediate referral to a wonderful rheumy who confirmed the diagnosis and became a very reassuring presence in my life for the next few years!

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.  

 

No MrsO - not depressing, realistic! My MIL used to say she always waited 3 days before going to the doctor - as I pointed out to her, do that with a heart attack, stroke or GCA and it may well be far too late!

Wise words as ever, Eileen - I bet MIL took note, even if she didn't let on!

I like the acronym for  PMR.  Got one for Pred??