Can this be GCA happening to me after 1 1/2 yrs. ... - PMRGCAuk

PMRGCAuk
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Can this be GCA happening to me after 1 1/2 yrs. of PMR?

composition
composition

getting concerned re Giant Cell A. Have had PMR 2 years and am down to 9 mg. prednisone, all going fairly well, then about 1 month ago my vision began to blur off and on, thought it was my glasses. I have an appt. with opthalmologist this coming week. However, now having eyeball and temple headaches almost every day. I never have headaches normally. My last sed rate was 22, and the CRP was low, good, a month ago. My rheumatologist wants blood work repeated the first of the week. Does this sound suspicious or am I just obsessing? Thanks!

17 Replies
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DorsetLady
DorsetLadyPMRGCAuk volunteer

hi,

Yes it could be GCA, hopefully not - but at least it's being checked.

Please let us know.

Firstly, you are very fortunate to obtain an ophthalmologist appointment. Straight to the heart of the danger. I think you are being appropriately vigilant. Good luck!

PMRpro
PMRproAmbassador

Suspicious enough for me to be very pleased your doctor is wanting up-to-date bloods done, I hope he is also seeing you too? Bloods can lag behind, especially when you are on pred, even a relatively low dose.

Hope it isn't - but at least your doctor is looking.

I am sorry to disagree, but I would not be waiting for an opticians appointment. I know it is a worry - but you should go yo A&E now. Your sight is important and the hospitals are open for other than Corvid.

I can tell you this - a friend was admitted to hospital last week - he did not have Corvid and he taken to a separate area when being admitted to the hospital.

I just would not take the risk.

is there any way to diagnose GCA other than temporal artery biopsy?

PMRpro
PMRproAmbassador
in reply to composition

Ultrasound when it is available, although TAB (the biopsy) is not very reliable. When it is positive it is 100% accurate. When it is negative that isn't conclusive it isn't GCA, it means they didn't find what they were looking for, the giant cells. There are various reasons for that - including what are called skip lesions and the fact the GCA hasn't affected that particular artery, doesn't mean it isn't in other arteries though. Otherwise it is a clinical diagnosis, backed by response to pred.

Yellowbluebell
YellowbluebellAmbassador

Symptoms rule with gca and pmr and a response to pred. Once on pred a biopsy will.often be negative. You are being looked after well it seems.YBB

Generally, when double vision is present, the patient is typically put on a prednisone IV drip in the hospital to save the eye sight. In your case, you are only experiencing blurry vision, (plus the head pain). Without the raised CRP, I don't think any doctor would rush to diagnose GCA or order an invasive biopsy.

My case was similar, though I also had scalp tenderness and the beginnings of jaw pain, but similarly did not have a significant rise in CRP, so my rheumy put me on a burst of 40mg prednisone to protect the eye sight. Once I dropped back down to my previous dose of 5mg the GCA symptoms returned with a vengeance, such that I was convinced it was GCA and I requested a biopsy. When the result came out positive I was put on 60mg prednisone and started the standard GCA treatment.

I hate to whine, but I just cannot---cannot---face increasing the prednisone after getting down to 9 mg. I am holding on and "out" for a couple of days to see what happens. The headaches are more from noon on, in the jaw a bit and behind the eyes and yes, in the temples. And no double vision, just blurring. I am in the states, so you'll better understand: I see a rheumatologist, an oncologist hematologist for MGUS, FP for feet neuropaties that started with this PMR, and to ice it off: an orthopedic specialist who is evaluating the stress fractures since starting the steroid. This is 2 yrs. in October. Knowing many, many of you have much more difficult stories to tell, I probably should keep my vent to myself...thanks for listening though.

PMRpro
PMRproAmbassador
in reply to composition

No - your vent is fine. But do bear in mind that if it IS GCA turning up to play - no pred may mean no sight, It is a powerful argument.

Yellowbluebell
YellowbluebellAmbassador
in reply to composition

I personally wouldnt be prepared to risk my sight over an increase in pred. There is no discussion that would make me not up my pred immediately if there was any risk of gca. No side effect of pred would put me off taking it to save my sight. YBB

I totally understand. Now you’ve got all that off your chest. Get it sorted! I was down to 3 mgs after 4 years. Patience. 🌸

We all like to vent and many ladies on the Forum are brilliant at putting our minds at rest. Prednisone can make eyes blurry as they have done to mine too. Helps once I put on my glasses. Optician told me if they were still blurry when wearing glasses he'd be more concerned. GCA is such a worrying disease and seems such a lot of symptoms. Each side near top of my head hurts when I touch it. Jaw discomfort no where near what it was. However, I'm now experiencing left foot numbness, which I think is due to vasculitis, which GCA is. I've dropped from 40 mg to 30 mg then should have been 20 mg, all on rheumatologist advise. But instead of dropping to 20 mg I've been on 22.5 mg. But, the steroids are now dragging me down mentally big time, I feel so low right now and nothing to do with having to be in lock-down. So this morning I've taken 20 mg and will stay on that for two weeks. My face is getting really fat now, my hair is thinning and looks frizzy now too, this is all down to the Prednisone. Hoping so badly that as I reduce my symptoms don't return. We all have been advised to reduce very slowly which I will continue to do. If I manage on the 20 g for the next to weeks I will only drop by by maybe 2 mg of even 1. 1/2 mg

With your range of symptoms I wouldn't take the risk. The sight can be irretrievably lost in an instant, think stroke in the eye.

Your choice but be sure to think what the consequences could be.

I have been 5 years on prednisolone after having a GCA relapse when I got to zero on the first case. I have just got to zero again but would go back on it again if it started up again.

Yellowbluebell
YellowbluebellAmbassador
in reply to granny-b

Me too with hesitation xx YBB

PMRpro
PMRproAmbassador
in reply to Yellowbluebell

Or without???????

I have had I think pmr fir 4 to 5 years came home in January as I live in Thailand 6 months of the years looking after new grandchild and a 7 year old. My eyesight wasn’t right waited til I got back but on first day back I rang gp as something wasn’t quite right. Gp brilliant rang out of hour optamologist I was put on 60 mg prednisone immediately to await emergency appt. it never came until weeks later another go got my emergency appt March still on the 60 mg. said I didn’t have GCA but a week later it magical appears after mri scan and neurologist read my scans I had see rheumatologist one time before putting me on methotrexate injections and alendronic acid no meta scan befor hand. Had to to stop after 8 weeks as could not tolerate it meds now as a result I am have a sliding hiatus hernia repair due to methotrexate and alendronic just be careful what they put you on and that you can tolerate it before weeks pass.........in the other ha d lost of people swear by it.......just the luck of the draw. Take care.🙏🏽

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