I would appreciate advice please. Having recently experienced a flare I am down to 25 pred. but have acquired arthritic pain in both thumbs, together with 'cricked neck'. All bearable. Jaw problems have disappeared.
This morning I woke with a black area in my left eye (looked like a reflection of my eyelash) - it took a few minutes for this to clear. No headaches, but am wondering if this could be GCA rearing its head again. Advice would be so much appreciated, this group has been so helpful in seeing me through this wretched illness.
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Gb2613
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Gb, with a diagnosis of GCA, any changes in your vision should be checked immediately. It may just have been a one-off, but better not to leave anything to chance with GCA. If it were me, I would be hot-footing it to a good optician at least, one who will examine the back of your eyes with the relevant equipment to check for any problems. Of course, in the event of a repeat of the experience, or any other visual problem, then don't hesitate to go straight to A&E.
Thumb pain can be quite common and certainly a symptom that I experienced along with the neck pain, but I did have a diagnosis of both PMR and GCA. On the other hand, is it possible that you have been doing something to aggravate both your neck and your thumbs - gardening perhaps? I was able to resurrect some supports for my thumbs, having had them made years earlier following a diagnosis of RSI. For the neck pain, in my early undiagnosed days I had to resort to a neck support collar but once diagnosed and on treatment I found that an electric heat pad worked a treat.
I do hope the eye problem in particular turns out to be nothing but do get it checked. Good luck and do come back and let us know how you get on.
Thank you for reply Celtic. I saw doctor who sent me to the Eye Clinic in Birmingham. Triage assessment was for me to attend the Urgent Care Clinic next Thursday for tests! Because I have had this problem for a couple of weeks she didn't see it as an emergency (this morning it was more noticeable, some days intermittently not there at all!). My optician is away until Monday but I am waiting for a call from him, so it looks like A and E if in doubt.
I can cope with thumbs and neck - par for the course!
You don't often suddenly lose vision, you can and then it is called occult GCA, but in the majority of cases there are signs in the week or so before. One of the things mentioned in visual symptoms particularly is "if it is in the morning or after waking from a nap". So yes - if it gets any worse, A&E. Is there an emergency unit at the Eye Clinic in B'ham? If so, go there.
Just wanted to say thank you for advice received - situation no better today so went to my local A and E (never heard of GCA!), transferred back to Eye Hospital but had already increased steroids to 60 this am. Outcome good - no damage to vision - but it has been a long, arduous journey!
What did the Eye Clinic say? I hope now that the staff at A&E might read up on it (some hopes!).
In Yorkshire the paramedic training includes GCA as something for consideration if a patient presents with certain symptoms and if they are suspicious they know to take the patient as an emergency to hospital - just as they would with a stroke or heart attack. So one would hope that their A&E is also taught that...
Not a very reassuring trip to A&E, Gb, but I suppose at least one member of staff there has now heard of GCA! Has what you describe as the "black area in your eye" resolved since increasing the steroids back to 60mg? Did the Eye Clinic give you any advice about reducing from here? Hopefully, you will be able to reduce back down fairly quickly to at least 40mg - that proved a sufficient starting dose for me.
The black area righted about an hour after waking - but was very scarey this morning. I am hoping to reduce to 40 after 2 weeks, provided the symptoms have gone. Is it ok to do it sooner?
That's why I asked what the Eye Clinic said. Have you to go back? Or see your rheumy?
Since you have had GCA-type visual symptoms, no, I wouldn't reduce until the doctors say it is OK. Just because you don't have symptoms doesn't mean you are out of the woods and I definitely wouldn't reduce any sooner than they say. A study a couple of years ago showed that there is evidence of inflammation still present even after 6 months of high doses of pred.
However unpleasant pred may be - it isn't worse than not being able to see properly.
The Eye Clinic specialist have agreed that I work out schedule with my doctor - who has been most supportive so far. I have no faith in th Rheumatologist who wants me off pred. a.s.a.p.
I have an appointment on Thursday wth the Eye Clinic if I am still in trouble - otherwise back to see doctor on this in the next few days.
I won't rush it - I have realised when you have a choice between sight and pred there is only one way to go!
Really I meant did they think it could be GCA causing the visual symptoms?
They rheumy can "want" all he wishes - it isn't his sight! I do wonder why GCA is under rheumies - it is well known that ophthalmologists are far more aggressive because they are far more aware of the risks, just you rarely get to see them in the UK. In other countries neuro and eye departments are far more likely to be included.
She thinks I am 'borderline p.m.r. and GCA as my main problem has always been jaw claudification. I have not presented with headaches or eyes previously. My bloods were raised but not as previously and no signs of swelling or loss of vision. I do have a floater.
I think she is taking the cautious route by maintaining my present dose for a couple of weeks. She feels my likely stability dosage will be 30 which I was on until 2 weeks' ago.
I do agree about the rheumy, it is so refreshing to see someone acutely aware of GCA.
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