Please can anyone advise on eye issues? - Behçet's UK

Behçet's UK

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Please can anyone advise on eye issues?

VickiOliver
VickiOliver

Hello. This morning at physio my therapist asked if my eye was ok as it's bloodshot on part of it. I said I had noticed since I woke up that it feels irritated. It's stinging so I'm guessing ice scratched it but wanted to ask what signs I should be looking out for.

I also have an infection at the moment. It's a cold that I picked up four weeks Ago gone rogue. I'm not healing as well since starting Humira 8 weeks ago. The cold turned into an infection, and I'm now on amoxicillin and off my next Humira injection to get fully better. I know behcets is active as I have lots of ulcers in my throat including 2 on my uvula and one that's giving me horrible ear ache.

Anyway does anyone have any advice?

18 Replies
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TonyWT
TonyWTAdministrator

Dear Vicky,

If you have concerns about your eyes then you need to see an ophthalmologist. Don't wait to try to get an appointment with your GP or other treating clinician; unless he or she is an eye specialist and can see you immediately. Just report to A&E and ask that you wish to be seen by an ophthalmologist, and ask that he/she checks particularly the back of your eye for inflammation (uveitis) ordinarily with a slit lamp.

However, have a read through the attached (link) first - and you may feel that what are experiencing is nothing untoward.

behcets.org.uk/wp-content/u...

But, if you remain in any doubt get it checked out. Take a print of the Factsheet, which should help the treating clinician check for what you are concerned about. Eye problems in Behcet's are symptomatic - i.e. you can't check for it in advance, it just happens. So it needs to be checked out at the time, in a timely manner, then one can be treated appropriately with less risk of irreversible damage.

Hope this helps to reassure.

Tony

VickiOliver
VickiOliver in reply to TonyWT

Thank you so much Tony this is super helpful.

I contacted the Cof E London and their response was to see a local eye doctor. I have no idea how to do this. So I sent an email back asking how I find an eye doctor. The reply I had was to see my GP to find one.

My exact worry was how long this would take to happen. I think London think these things happen overnight. When I was diagnosed by London with TB last year I was told to go to see a TB centre. They don't exist where I live. It took me over three months to seen consultant and be treated.

I do find that in the limbo between clinics I'm not supported at all and the emails are not taken seriously or like I'm making a fuss. With the infection I went to the GP as the clinic told me not to go to them. The GP gave me antibiotics but would not make a decision on Humira, they said try care at home. Care at home made the decision to stop it but wouldn't authorise when to begIn treatment again. Their instructions were to contact the c of e. The c of e are now asking my GP to make the call in another appointment to confirm the infection has gone. I'm going in circles and everyone always asks me to talk to someone else. I'm tired, unwell and not managing!

Sorry to grumble but I'm struggling.

I don't want to be a burden on a&e.

I'll read the article and try to make a decision in the morning.

Vicki xx

Stacey-
Stacey- in reply to VickiOliver

Hi Vicki from someone who has had severe Eye problems with Bechets in the past. Please go to your nearest a&e during the day as an emergency and you should get seen with an eye dr. They will check your eyes properly and prescribe meds to take control of whatever is going on. You may have to wait but it will be worth it. You arent a burden you are unwell and by the sounds of your symptoms your Bechets is active and needs meds to get it under control. I also take Humira. I have done for 8 years. No-one has every told me to stop it when I have been ill with infections is this why your in flare. I hope you get on ok.

VickiOliver
VickiOliver in reply to Stacey-

I've just been to A&E. My eye is aching now and the redness has spread across all of it. Triage were excellent and instead of admitting me through their route got me an emergency appointment with an ophthalmologist in the hospital’s eye clinic this afternoon. I will update after I’ve seen them.

sian35
sian35 in reply to VickiOliver

I understand your frustration about going round in circles between London Coe and other specialists. Not sure what the answer is. Sorry to hear about your uveitis but pleased you were seen. Been down that route myself. Make sure your eye pressure is monitored as steroid can affect it.

VickiOliver
VickiOliver in reply to TonyWT

It was uveitis and going to a&e means I was seen by a doctor today xx

I also get this and it’s considered uveitis! I am followed by an ophthalmologist closely! I would schedule and eye doctor appointment and have them take a closer look! They can provide some eye drops for some relief!

VickiOliver
VickiOliver in reply to Niki318

Thanks Niki. I have an appointment this afternoon/ evening to see one. The advice above was brilliant. Sorry to hear you have eye issues xx

Definitely see an Opthalmalogist. The same thing just happened to me and it ended up being scleritis from the Behcet's. When my Rheumatologist found out he said we needed to be more aggressive with my treatment. I was on Remicade, Prednisone, methotrexate and Folic acid. He took me off methotrexate and folic acid and put me on Imuran. Please get it checked out.

Thank you to everyone who responded. I went to A&E and they found me an emergency ophthalmologist who I saw this evening. It is uveitis (anterior) and they are now treating it. I’m glad I didn’t wait on my clinics advice to go through my GP and that I listened to the advice here. It was developing quickly and the doctor said I’d caught it quickly so they should be able to control it.

I am glad its being treated. It will just take time but with correct meds it will get better. My left eye was very damanged but with intense steriods via a drip it got better. Hopefully now you will be seen regularly with an eye specialist.

TonyWT
TonyWTAdministrator

Dear Vicki,

Good to hear that you were seen promptly, though not obviously that is is uveitis. This is, now, an understood condition and clinicians know what to do. So take confidence in this, as we all know that stress, anxiety etc, aggravates Behcet's. So don't give it the benefit of that factor!

If you ever have further worries when something 'different' is going on don't wait; report in straight away as you did here and don't feel guilty (as some people do), that it may be nothing and you might be wasting peoples' time.

Suggest keep a diary, if you don't already, of what you are variously doing, diet and so forth, and you might just spot a pattern.

All the best.

Tony

When you have Behçet's it is always best to err on the side of caution when it involves your eyes, you may have a touch of iritis, I would recommend anyone with eye issues to see an optician they have the skill and the knowledge to know what your problem is and they have the authority to refer you to see an ophthalmic consultant. There are many things you can keep an eye on (no pun intended) distorted vision i.e. if you look at straight lines and they appear curved or bent, blurry vision, blind spots, colourful swirly patterns, floaters; black dots and shapes that move around when you move your eyes, a few floaters can be quite normal, so you need to look out for either, large floaters or lots of small floaters in the case of either of these see an optician immediately, lastly redness apearance of the eye companied with soreness; as you have, especially if it persists.

I personally have lots of eye damage caused by Behçet's in fact at this very moment I have an ulcer just below the cornea.

So if you have Behçet's syndrome and experience any eye issues seek medical attention as soon as you possibly can.

I hope your redness is just as you think and is not of great concern but please get it checked out.

I wish you well.

kind regards,

rosshi

VickiOliver
VickiOliver in reply to rosshi

Hi Rosshi. I had it checked out through a&e and it turned out to be uveitis. I'm glad I took everyone’s advice and got it checked.

Vicki x

rosshi
rosshi in reply to VickiOliver

I'm ever so glad to know you got it checked, I'm sorry to hear it is uveitis and hope you are on a good treatment plan, I have had a long history of eye problems including posterior and anterior uveitis and am goppy to say that early treatment and meds have greatly improved from when I 1st had my eye problems back in the 80's.

Again I am glad you are being treated and wish you well.

Best regards,

rosshi

Sounds like you will need an eye dr to look at it if u r concerned. Good news from my sons eye dr was it u have behcets with eye involvement it is so painful that u csnt stand it and will get to the eye dr for sure. Keep in mind to and I know it is hard that you will get "regular people sick" and it may not b behcets related. Glad u have an a antibiotic. Good luck

VickiOliver
VickiOliver in reply to duke22

It was diagnosed as anterior uveitis the next day after the original post. There's no infection or damage. The anti bio tics cleared up the respiratory infection. The infection triggered the Behcet's

duke22
duke22 in reply to VickiOliver

Sorry I didnt see the post where u have the uveitis. I don't know much about it cause we ran fast after the dr said he was good on the eyes. Tbe fear is tremendous I think. It seems everything g triggers my sons behcets. He also gets a flare that last at least a week around every six weeks. Sucks sucks sucks. I will say he is way better on the all beef diet...BUT it is so hard to stay on but the inflammation is way down. The problem is that everything seems (I know that is extreme but seems like e everything) to trigger the inflammation so a little cheat is a big cheat

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