Eye sight loss left eye could this be lupus or Connective tissue disease?

[Geeforce99]

hi can anyone advise if eyesight loss due to bright zig zag and fog then total loss with temple pain could be due to lupus or CTD ? I have been to A&E have urgent eye clinic appointment this week.

would love to hear from anyone one 😃

[PMRpro]

How old are you? Have you any other symptoms? Has the vision in the eye returned at all?

I would say much more likely to need to have GCA (giant cell arteritis) considered - and it may be a rheumatologist you need to see as well as the eye people.

Have you been put on high dose corticosteroids in the meantime? If it does turn out to be GCA there is no time to lose now - once the vision in one eye is gone there is a high risk of the other going within a few weeks without immediate and aggressive management with steroids. I'm sorry to sound so dramatic but that is the reality and something we meet only too often on my home forum PMRGCAuk.

[Geeforce99 in reply to PMRpro]

Hi Thank you for your reply, I am on low dose of prednisolone which started high and has been reduced to low dose to try and see if it help lupus leg pains . I see rheumatologist Wednesday and eye clinic Tuesday, sight is back just blurred at times at present. I have 20mg steroids if I need them.A&E doctor was unsure if Covid related or lupus related. I still have post Covid fatigue.

[PMRpro in reply to Geeforce99]

I can't empahsise how time critical this may be. Yes, it could be Covid related, it is known to cause vasculitis - but if anything changes again, go back to A&E and mention the possibility of GCA in relation to the temple pain and visual loss. GCA is a medical emergency - 24 hour response is appropriate. It parallels a stroke or heart attack.

[StriatedCaracara in reply to Geeforce99]

I'm having eye issues after covid 2 years ago. Know someone else too that is now seeing eye specialist after covid.

I had ultrasound of temple as well as ESR blood test as immediately had to rule out GCA. Have you had these checks?

[StriatedCaracara in reply to StriatedCaracara]

Still getting photophobia and OCT has shown change to choroid, that is being investigated swiftly

[Geeforce99]

Wow thank you for you help and information I will certainly be careful an do as you say the only other thing I forgot to mention, it started with extreme sensitivity to light then headache then temple pain and bright zig zags then fog then spread and no vision.

[PMRpro in reply to Geeforce99]

There are other things it could be - but without proper investigation they can't rule it out. Fingers crossed it isn't and it is something relatively innocuous.

[Geeforce99 in reply to PMRpro]

Thank you for you reply I appreciate you advice and information take care. Wishing you more good days 😃

[KayHimm]

Just want to reinforce what @PMRpro advises. The key word is change. Your appointment is not for five days. If you get worse, just go to A & E. They will get an ophthalmologist to see you.

Best of luck

K

[Geeforce99 in reply to KayHimm]

Thank you for your reply now I understand how serious it could be definitely will go to A&E if gets worse, now wearing Polarised sunglasses really has been helping me today. Take care 😃

[KayHimm in reply to Geeforce99]

😀

[Sweetnlow in reply to Geeforce99]

Don't wait for it to get worse! Listen to PMR Pro. Been through this. Blood wasn't elevated, later it was. Left eye hurt deep inside an cheek an brow area hurt. Sharp daggers of pain in eye. Side of face hurt and swole. I had prisms floating, bad headaches which hit hard and quick in temples. Blurred vision. My eye specialist had me on prednisone drops 6 times a day, a drop to enlarge the eye so the prednisone could get in an work plus a drop to keep my blood pressure down in eye so I wouldn't loose my sight. My rheumatologist was steady doing blood work. I had temporal arteritis surgery..giant cell arteritis on both temples. If you only do one you side you will have to repeat the surgery for the other temple. Main known examples of medium and large vessel vasculitis, including mainly the aorta and major subdivisions and carotid arteries. But they cut me from temple to ear and took my arteries out, sampled both sides an sewed me up. I was negative. Thank the good Lord. You can have strokes, blindness, etc if you don't promptly take care of it. I immediately act because I didn't want to take the chance of going blind! Both my vascular surgeon and rheumatologist encouraged me to act quickly. I later was diagnosed with lupus. Also connective tissue disease. I have 4 aneurysms in my heart of which several specialist have said lupus could be the cause of them. I'm 72 and will not go through any open heart surgery. Period. Hope you take heed and prayers for your healing.

[Chris21]

My daughter had the same symptoms as your describing, Emergency eye clinic ruled out GCA because she was too young to have it (she’s 40) 🤷‍♀️ It turned out to be diabetes and her blood levels were running extremely high. Now on insulin and eyes are better. Hope you get it resolved quickly as to what the problem is.

[PMRpro in reply to Chris21]

There is no "too young". The youngest confirmed case I know of was a 37 year old male in South Wales - confirmed at the post mortem. He died of a stroke due to undiagnosed GCA. There are repeated warnings in the medical literature about missing the diagnosis because of believing there is an age limit. It is uncommon in under 50s - but it does happen and there is another form of arteritis which is very similar which is diagnosed in younger patients. I know one lady whose diagnosis was Takayasu's arteritis originally but some time after her 50th birthday she noticed it had been changed to GCA. When she queried it, she was told that in over 50s it was called GCA. Hum ...

[Chris21 in reply to PMRpro]

That was how I felt when the consultant said it. It’s almost like they have magic numbers for medical conditions. At 16 she was told she was too young to have a discectomy, it only happens in old people 🙄 and then they weren’t too sure on her after care as being young she ‘bounced’ back quicker than expected. I understand they have to have a guide but sometimes they just don’t want to think outside the box and why it seems to be a constant argument to get them to listen.

[LottieLou96 in reply to PMRpro]

Hmm indeed.

I read your advice from yesterday and today and it has been very good .

There are a number of things it could be, from atypical migraine to GCA or retinal detachment. And these can happen at any age, even though many docs do disregard due to age, the risk is lower but if the symptoms fit as and the investigations say yes, than it is.

From working at ED, at least where I live, we like urgent eye appointments prior to ED, because they can see the eyes in detail quicker than a referral to opthalmologists typically.

1. Urgent eye appt - see the back of the eye, rule out retinal detachment, check for papilloedema etc.

2. A and E - checking ESR and CRP, checking for any other symptoms, can start high dose pred and refer to opthalmology and rheumatology who need to confirm GCA within two weeks.

3. If symptoms worsen go back to A and E, and get the speciality to come down to review or scans to rule out something else.

4. Opthalmology or Rheumatology can do a temporal artery biopsy to diagnose GCA.

So yeah again it can be many things from sinister to not. But it's best to get the same day optician appointments and scans of the eye and in A and E for them to assess the likelihood of GCA by assessing your symptoms and examining and if there is concern to prophylactically start on high dose pred typically. If they think it's something else again that's okay too. But as everyone has said some things like retinal detachment and GCA are time dependent issues.

B W

Lottie

[PMRpro in reply to LottieLou96]

Absolutely. I find it so strange that in Yorkshire the paramedics are taught to recognise potential GCA but there are doctors in hospitals who don't know the basics. GCA with visual loss is, when all is said and done, a specific form of stroke. Amaurosis fugax is a potential symptom of stroke - not just GCA. In GCA it is said that amurosis fugax is a warning that allows you a week (if you are lucky) to avoid disaster. Don't waste that week ...I'll take a week of high dose pred to reduce the risk of losing my sight!

[LuluM25]

It may also be a tear in or detaching of the retina. I woke one morning like this, green zigzag flash and blurry eye, years ago, and saw my optician who referred me for immediate appointment at local eye clinic and later that day I was admitted to Addenbrookes in Cambridge for laser surgery. Not to do with Lupus but my odd eyes!! Easily fixed but not good if left too long, but the point, agreeing with others, is that I was seen urgently and it was done urgently. I can’t understand why you haven’t been seen at the eye clinic already. They always take emergency appointments. Keep pushing to get it sorted whatever it is that’s wrong. Good luck x

[Geeforce99 in reply to LuluM25]

Hi Adnil2591 They said there are no appointments until Tuesday and because my symptoms had resolved by the time I got to see A&E doctor they said I could go but return for urgent appointment Tuesday. If it returns I will go back to AE thank you everyone for replies and advice 😃

[LuluM25 in reply to Geeforce99]

Hope it’s sorted for you as quickly as possible. I did have another thought that it may be a migraine with visual symptoms. I used to get these also, not so much since I retired so I think it was work causing mine (haha). But, check your symptoms against migraine symptoms and see what you think.

[SurferGuy]

Hi Geeforce99, sorry to read of this. Hope you're feeling better now, and great that you have the specialists on the case 🙂

I had something similar to this 3 weeks ago. Rather then detail it all again here, here's a link to my thread healthunlocked.com/lupusuk/...