Is a droopy eyelid a GCA symptom?: I was diagnosed... - PMRGCAuk


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Is a droopy eyelid a GCA symptom?

Janstr profile image
13 Replies

I was diagnosed with PMR & GCA in Jan 2018 after nearly a year of symptoms.

I was initially on 40 mg of pred, now on 9.5 where I have been for 4 weeks as I didn't want to continue tapering as was in a period of stress having to decide & then putting down our 17 year old cat. Also I had thought of trying to taper to 9mg 10 days ago, but didn't as my CRP which has been less than 1 for some time, went to 3 which I know is in the normal range, but heading in the wrong direction & I also had shoulder pain & some calf pain & a low grade headache behind my right eye.

Over the last few days I have noticed my right eyelid drooping & have also had occasional involuntary sharp intakes of breath. This was happening frequently pre diagnosis & stopped when I went on the pred. This is the first time it has reoccurred, but is not as intense as it was before. I currently have no other symptoms ( headache & other pain has gone) & CRP today is back to less than 1.

So a couple of questions..

1. Is this droopy eye part of GCA & if so should I be worried about it?

2. I was going to start tapering tomorrow to 9. Is this a good idea?

13 Replies
PMRpro profile image

I've never seen it included in GCA lists - but it can be a sign of other things that may be associated with GCA such as TIA/stroke if it is one-sided. Myasthaenia gravis should also be considered - though it usually gets worse through the day as you tire and is bilateral.

I'd wait another few days at least before tapering - this isn't a race.

Janstr profile image
Janstr in reply to PMRpro

Thank you. If it could be a TIA do you think I should see my GP tomorrow?

PMRpro profile image
PMRproAmbassador in reply to Janstr

If you've had it a few days and it isn't improving then you need a medical opinion.

Soraya_PMR profile image

Bell’s palsy? Usually involves some facial paralysis as well.

Lyme disease?

Old age?!!!! 😮

Did i read somewhere that someone had puffy upper eyes (prob due to pred) causing that ‘droopy’ look?

YuliK profile image
YuliK in reply to Soraya_PMR

I don't know how 'young' Jan is, but I have droopy eye lids and my plastic surgeon said it came with old age. I'm 76 years

Janstr profile image
Janstr in reply to YuliK

Thanks. I will get a GP appt & check

DianeA1 profile image

I cannot answer your questions, but I am very sorry to hear about your dear pet.

Janstr profile image
Janstr in reply to DianeA1

Thanks Diane.

Marilyn1959 profile image

My husband has droopy eyelid syndrome and has been diagnosed with condition called Ptosis. We have never heard of it before but there are probably several things it could be. So rather than trying to second guess what it might be I would urge you to seek a qualified consultation either with GP or optician since both can refer to opthalmist.

Janstr profile image

Thanks for your help

yewtree profile image

I have been on steroids nearly 3 years and last year was diagnosed with ptosis by the optician. Also had to have 2 cataract operations. Saw the eye specialist who said the eyelids would be dealt with after the cataract operations. Last November my left eye completely closed and I developed double vision. After a blood test taking 8 weeks (with eyelid having to be taped up) the test came back positive for Myasthenia Gravis. 8 weeks later saw a specialist who put me on a drug four times a day,which opens the eye and corrects the double vision but may be on it the rest of my life. Meanwhile still waiting for the second cataract and possible an operation for ptosis on left eyelid. All part of life's rich pageant. Oh and by the way I also have to take 5mg steroids daily for ever for the Myasthenia!

yewtree profile image

Should have said that the closed eyelid co-incided with coming off steroids so the steroids were keeping the eyelid open - when I had to go back on to them because of stiffness the eye half opened!

Janstr profile image

Thank you Yewtree. I have looked this up on the net & hope it's not that, but if it is, as you say, it's part of life. I see that there is a blood test which is positive for 85% of patients with the condition & will ask my GP for this test. I have just come back from seeing her & she thinks it may be GCA related & has increased pred just in case & to see if it helps. From what you are saying it may help.

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