Anyone had eye problems as a sympton of wg?H... - Vasculitis UK

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Anyone had eye problems as a sympton of wg?Had course of Pred.which appeared to clear it.Has come back.Problem was there pre-diagnosis John

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vivdunstan profile image
vivdunstanVolunteer

I have had significant visual problems since the mid 1990s when I first fell ill. But the problem wasn't in my eye so much as in my damaged brain from my cerebral vasculitis, in not being able to process the visual signals properly. I had slowed-down vision and very tunnel-like vision. I would also constantly think our flat was on fire, because I would see what seemed to be smoke all around me. And I would get strange psychadelic effects going across my vision.

Luckily the vision problems is one of the few areas that improved for me with immunosuppression treatment, so not just prednisolone, but also azathioprine. I still have vision problems, but they're not as bad as they were, and they haven't worsened. Wish I could say that for the other symptoms ha!

PatriciaAnn profile image
PatriciaAnn

Hi John

The common symptoms of WG can include red (blood shot) eyes, painful, dry or gritty eyes, visual loss or other changes in vision.

You say you have had a "course of Pred". I take that to mean you are no longer taking any Pred. If you didn't take it for very long or if are now off Pred altogether it may be that the inflammation is no longer being controlled. There does seem to be a tendency to try to get patients off Pred asap, but I'm afraid it doesn't work with lots of us. Are you on any other meds?

As I often tell members, don't mess about, get in touch with your consultant and let him/her sort this out for you. Hope it resolves soon.

PatriciaAnn

buddy70 profile image
buddy70 in reply toPatriciaAnn

Not on any other med. just now..Before wg. diag. was treated with drops fur recurring eye problem.After diag.and 1st course of pred it cleared up.I made no connection.Returned to opthamologist after recurrence and more drops for "scarring" due to previous infectionTold him of wg,said he would look it up! See my consultant early Nov. Thank you PatriciaAnn John

longbank123 profile image
longbank123

Hi I have runny eyes, red eyes and they sometimes feel gritty, taking prednisalone 15mg. & azothioprine 200mg at present

nanny4 profile image
nanny4 in reply tolongbank123

Hi there,my daughter has just been dxd with small vessel vasculitis,she is 27,I know the eye thing is the least of her worries but she has had dry itchy sore eyes for years,she has before dxs had to take up to 8 hayfever tablets a day for itcy skin dry itchy eyes,we didn't know that it was a sympddodoedoesdoes aananyananyone have any advice for my daughter re the eye dryness itching,is it just the usual over the counter stuff or would het g.p be able to give her anything specific.many thanks Sandy.

JennyH-M profile image
JennyH-M

Eye problems with WG can also occur at the back of the eye involving granuloma forming on the optic nerve. I have this, but St Thomas' say its neurosarcoidosis, though I also have ANCA pos. vasculitis. Itchy dry eyes are apparently a common complaint, which basic eye drops can soothe.

johnyenglish profile image
johnyenglish

Hi John, I developed diplopia 4 day before being diagnosed with WG in 2009, prior to that my eyes had been extremely red and bloodshot for weeks. It took 4 months of steroids and cyclophosphamide before my eyesight returned to normal. 3 years on and I still get the odd gritty period with my eyes and now wear glasses full time, although that could be an age thing :-) I hope things get sorted for you.

Cheers, John.

High dose steroid use (Pred. and IV Methyl Pred.) are suspected of causing a permanent serous retinopathy (bit.ly/PTjNgp) in one eye and the likely cause of developing cataracts.

John_Mills profile image
John_MillsVolunteer

Hi John,

This problem is almost certainly due to the WG and needs urgent intervention, so get off to see the ophthalmic consultant pdq. You don't say how long it is since you were diagnosed and how long you have been off all medication.

As of yesterday I have an article written by Dr Catherine Guly, consultant ophthalmic physician at Bristol Eye Hospital, entitled "Vasculitis and the Eye". It is an excellent and comprehensive article which was written by Catherine specially for inclusion in the new Vasculitis UK website, which will be accessible within only a few days, although this particular article will only be added later, as it arrived just too late for inclusion in the initial launch. It is written in such a way that it is intelligible for patients but is highly informative for doctors. If you would like a copy of the article sending by post or email, please send me a private message with your email and/or postal address. I'm pretty sure your consultant ophthalmologist would find it interesting and informative.

A less detailed version of the article will be included in the Vasculitis UK Newsletter, which will be published in October.

Best wishes - John Mills

buddy70 profile image
buddy70 in reply toJohn_Mills

John if you look in questions, I replied to an ,answer I received from PatriciaAnn.This gives a time-line which might make more sense. Thank you John

Peter_Langley profile image
Peter_Langley

Hi all I have WG was diagnosed in 2009 and I have lost my peripheral vision even with all the meds I have been on it has not come back, it is possible that it is permanently damaged but could be treated with laser eye surgery, not sure on whether to have this though as very nervous about having my eyes messed with. Peter

mandijt profile image
mandijt

Hi John

WG. I have had flares that have involved one eye. I can only liken the pain to something similar to the worst kind of "toothache" kind of pain! No strong painkillers ever work - the only thing that does work is an increase in the pred. Initially the pain starts with a sort of tightening feeling in my eye, then in starts to water, becomes bloodshot and is very sensitive to the light - then it feels as though i'm been stabbed in my eye! Usually, i get a pain down the same side of my nose too and the sensation that i want to sneeze all the time and then my nose runs constantly.

Hope your well

mandijt profile image
mandijt

oh, and yes i did have these problems pre- dagnosis too. I was being treated for neuralgia, migraine.......i think my dr was feeling quite helpless really!

buddy70 profile image
buddy70 in reply tomandijt

Your symptons mirror my own, even down to pain on the same side of my nose.Eye problem in remission at the moment,but as seems to be the case with newly-diagnosed wg sufferers other niggly things occur,namely pains in my joint.Am taking prescribed painkillers which are helping somewhat Thank you John

RP99 profile image
RP99

I had scleritis when I had a mini relapse (GPA) I was checked out by the eye hospital and told that my meds were not strong enough. Meds increased and taken with Pred - all cleared up now and back in remission. Was informed that If scleritis is not treated it can cause damage to the eye so it's best to get any eye problems checked over.

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