Is it returning, am I paranoid ?

[doubtfully]

GCA diagnosed about 5 years ago. Biopsy was insufficient so diagnosis on basis of symptoms. I had Ben on pred for 6 week for Pmr by then anyway any the artery they took was too small.

Consultant to me well over a year ago that it had run it’s course and was gone. Both the GCA an the PMR.

The Pmr has rumbled on .

3 weeks ago I started with bad headache. Pain on combing hair. Then the occasional floater I had was replaced with a few spiders legs, that was Friday night. Saturday the spiders had got bigger and by bed time I was seeing non existent lightning strike.

I phoned my optician on Monday morning and the said not to worry not an emergency and gave me an appointment for Saturday.

Has anyone else experience of this? Is it unrelated to GCA ? Thanks for reading and fo any advice

[PMRpro Ambassador]

Not an emergency? Will she say that if it does turn out to be a flare? There are other causes of such visual symptoms but they need to be ruled out and some of them I would consider need urgent attention. There is another post today from a lady who has lost the botton 1/3 of her vision in one eye - back on very high dose pred in the hope of saving the rest.

Get thee to the ED/A&E and get a more founded opinion. Before lunch.

[scats in reply to PMRpro]

Every day more people come here for help because their so called professional carer has let them down. I get so angry when I am told this is the most common of the rheumatoid illnesses and yet so many medics do not know how to treat it. Even the high profile coverage does not seem to make waves, "trust me I'm a doctor", etc

OK old people get painful and stiff, but not fit and healthy ones over night as we hear of daily, and as for being allowed to go blind because your rheumy could not be bothered to keep up with modern developments, it should be a criminal offence.

Not only angry but saddened that so many are suffering unnecessarily. That they have to come here to well educated volenteers when well paid proffessionals have let them down.

[Longtimer in reply to scats]

Couldn`t agree more.. Have been on Pred for 8 years now, and let down by Rheumies, I thought I was a rare case, but all these years later, not enough has changed....I just cannot puzzle out why someone can lose their site with a condition they may have and not be taken seriously......I hope one of the useless rheumies I saw will learn a thing or to from prof Dasgupta!....but I don`t hold my breath.....

[doubtfully in reply to PMRpro]

Thanks s always for your reality check. I phoned gp who arranged immediate prescription for 50 mg prod and contacted hospital for urgent referral. It was a locus I spoke to and he was great. Not the usual hard of hearing , slow in uptake GP 😀my faith is restored!

[PMRpro Ambassador in reply to doubtfully]

Let us know how you get on. I'd far rather a few days of too much pred than risk my sight. Don't care what any doctor thinks ...

[SnazzyD]

😮 I would be in A&E before they could say litigation.

[PMRpro Ambassador in reply to SnazzyD]

Me too. But I have told the story before of the lady who was on the phone to her daughter when she lost vision for over 20 mins. She eventually went to the doctor about a week later - after telling us! You can imagine what was said here!

[Yellowbluebell in reply to PMRpro]

I remember that conversation!! And yet no matter how many of us said dont delay they still did!! Even if a doctor or specialist doesn't take it serious we should and if that means camping in A&E then so befit!!!

[Marijo1951]

I hope by now you've already been to A&E. If not, you need to get there straightaway...

[Canarylady]

Hope you ve been to A&E,I m going through something similar to you at the moment,please get it checked out.

I now have an appointment at our eye clinic tomorrow,after going to A&E last week,they were brilliant and I had tests carried out straight away,and saw 2 eye specialist s.

Wishing you well.

Let us know how you get on.

Good luck

Ruth

[tangocharlie]

floaters and 'lightening strike' green flashes are usually due to the vitreous humor in your eyes breaking down as you get older - perfectly natural. The headache and scalp pains can be part of GCA though so it all warrants proper investigation especially if you've had PMR/GCA scares before

[PMRpro Ambassador in reply to tangocharlie]

They can also be symptoms of a detached retina - also a medical emergency.

[tangocharlie in reply to PMRpro]

Yes of course thanks, I was still urging her to seek attention - I have little enough eyesight left I don't hesitate to get checked out

[SheffieldJane]

Good grief! PMRPro has said it all. I believe your own instincts for self preservation are accurate. Please seek emergency attention asap. I would make a complaint about the Optician you consulted. There is an urgent training need there. Good luck!

[Telian]

Yes we have experienced this and yes it could be GCA which is a medical emergency and should be treated as such.

Your eyesight is at risk if it is GCA and isn’t treated with enough steroid. Doesn’t matter if it isn’t- no harm done. Go to A&E and don’t take no for an answer and insist on seeing a Rheumatologist.

Remember symptoms mean more than low inflammatory markers as you are on Pred and it will reduce readings.