CGA or No?: I was diagnosed with PMR 3 weeks ago... - PMRGCAuk

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CGA or No?

Stickgal316 profile image
15 Replies

I was diagnosed with PMR 3 weeks ago. At that time I mentioned I was having left forehead headaches and blurry vision. My PA wasn’t too concerned but put me on 40 mg pred for pmr. Not sure the symptoms are consistent with GCA. The headaches are left forehead, come and go and not severe. Feels like an ice pick. Just a small area. Now my right eye is blurry since last night like there’s a film. Would it be opposite sides like that? Any advice appreciated

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Stickgal316 profile image
Stickgal316
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15 Replies
PMRpro profile image
PMRproAmbassador

Being on 40mg is enough to mask some symptoms of GCA - and I have to say I feel a PA who wasn't worried about PMR symptoms plus visual effects was being a bit blasé. 40mg is also a very high starting dose for PMR. I think you need to get medical advice.

Stickgal316 profile image
Stickgal316 in reply toPMRpro

So, decided to go to er since I couldn’t get in to neurology for 3 months. Doc did a ct scan, bloodwork, chest X-ray. Says he can’t rule out vasculitis completely but no emergency as my optic nerve vessels looked good as did my abdominal aorta. But I thought ultrasound or PET scan were better than ct? It’s a rural hospital so maybe they didn’t have the ability. Anyway, interestingly after a month of pred my inflammatory markers (both sed and crp) have gone up. Mildly elevated but we’re normal before pred. What the heck? I have noticed an increase in stiffness and pain, so I guess it is explained at least. I’m on 35 pred. Geez! He did refer me to a new rheumy and a different neurologist, so maybe I can get in sooner.

PMRpro profile image
PMRproAmbassador in reply toStickgal316

PET-CT isn't widely available unfortunately - very expensive equipment to buy. If your inflammatory markers are rising and symptoms worsening there is something somewhere that needs identifying. so keep pushing.

Stickgal316 profile image
Stickgal316 in reply toPMRpro

Thanks I will. Called the rheumy and said if my primary calls to make referral they will work me in. Called doc and actually got his medical asst. she is calling them now. So hopefully will get in sooner!

SnazzyD profile image
SnazzyD

Well they might be. You should get urgent advice because of the eye issue if the 40mg is doing nothing. When did you start the 40mg and did it help at all? If the PA wasn’t concerned why did they put you on 40mg with the risks entailed? Could be something else like a type of migraine. Pred can make your eyes blurry after a few doses but just one eye is less convincing. In the circumstances of changing symptoms I’d say you need to get proper advice today; you don’t have spare eyes.

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

As stated, it may or it may not be GCA, but it certainly needs checking out. Have to say I don’t like the “filmy” eye description.

Stickgal316 profile image
Stickgal316

At urgent care now…fingers crossed

PMRpro profile image
PMRproAmbassador in reply toStickgal316

That is a relief!!

Stickgal316 profile image
Stickgal316

So, doc shocked my PA didn’t order any follow up with headaches and blurred vision. Referred me to a neurologist but said see my primary physician meantime. I have an appt with him in a week or so. Go to ER if any exacerbation of symptoms

Nightingales profile image
Nightingales in reply toStickgal316

Hi. I encourage you to go to ER if you have the slightest doubt. My ophthalmologist told me the eye symptoms in GCA often start as feeling like there is a veil over your eye. I also wondered why they didn’t refer you to a rheumatology but they may not be readily available in your area. Hope you feel better soon.

PMRpro profile image
PMRproAmbassador in reply toStickgal316

That doc needs a pat on the back. And the PA needs some education. Before they miss another case and put their sight at risk.

Stickgal316 profile image
Stickgal316

Thank you all for your concern

2013mayo profile image
2013mayo

Well it sounds a bit like GCA to me but I’m no expert. The fact you are taking pred masks the GCA symptoms, I too had this problem at the start of my diagnosis, I’d been taking pred for what my doc thought was chest infection, it took quite a while for correct diagnosis. Why don’t they do a ultrasound scan, that doubled confirmation of my diagnosis even though they were treating me for it for some time before, it still shows up, well it did on me.Hope you get it sorted.

Xx

SandraLinks profile image
SandraLinks

Could it be a cataract?

Stickgal316 profile image
Stickgal316

I do have very early cataracts

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