Sight damage

[sam0511]

Hi there, only been diagnosed with BD at the begining of this year, after years of thinking my migraines were hormone related. Unfortunately I got inflammation in my eyes, and the sight in one eye is now distorted. It has been explained that there is not much that can be dobe to improve this, but I was wobering if anyone else knew differently. Thanks.

[jzeis]

Hi sam0511, I'm sorry to hear this. I've had 30+ years of Behcet's experience, and uveitis and retinal vasculitis have been the most damaging symptoms for me (not for everybody tho). In spite of all the eye inflammation I've had, I still have 20/20 vision thanks to great care from a uveitis specialist in Boston. Do you live in the US or the UK (or somewhere else)?

Hang in there,

Joanne Z.

[sam0511 in reply to jzeis]

Thanks for this, no I am in the UK, but luckily I have a fantastic consultant who is looking to operate later this year on my effected eye. My inflammation was in the jelly, and still is, at the back of the eye. Unfortunately this has left scarring, but maybe the op will make a difference, but they have made me no promises. Still got perfect vision on left eye.

[magirose]

I am so sorry to hear this. This is why I am trying to tell people with cpntinual migraine that they need to look at underlying problems for this.

I had these migraines too with unexplained eye pains and problems but only one episode of uveitis.

I am currently on interferon. I have spoken to someone in my help group whose partner had sight issues which were helped by interferon. I am not sure his issues were similar to yours to be honest. But interferon is very successful with occular Behcets's. Please ask your specialist. It also controls those dreadful migraines.

Did you have any diagnosis for the migraine before?

[sam0511 in reply to magirose]

It always occurred at the time of my period, no exception,so it was assumed that they were hormone related. Behcets was mentioned years ago after I started to get ulcers, but I found a correlation to anti-inflammatories and these, stopped taking them and had no further problems. I had uveitis some years back but I wear contact lenses so it was assumed I had picked up some germ somewhere, but this eye inflammation is in the jelly, no pain at all, just vision went blurry suddenly. Unfortunately it was bad enough in the right eye to cause scarring. So, unlike glaucoma, cataracts etc, there doesn't seem to be much they can do. Left eye perfect. My consultants at Derby Royal have been fantastic. So I feel that if anything can be done it will be. Took 15 years to get a diagnosis, no-ones fault, just one of those things. I was finally diagnosed at the beginning of this year. On steroids to reduce the inflammation until the Azathioprine gets to work. This should then stop any recurrence. I have had no headaches since. It is great to be able to share this, as some of the symptoms are embarrassing, and as it is not very common, I have to explain my condition rather a lot. I just don't want to lose my sight, but my consultant assures me that the Azathioprine will prevent this. Sorry for the ramble, but if anyone else reads this and gets help finally, I will be happy. Anyone with migraines, because it is not just a headache, keep a diary. Mine was the worst head pain, with fluctuations in temperature, sweats, high temp so bad, I had a seizure, which is also a symptom of behcets.

[magirose in reply to sam0511]

I understand what you are saying that it is no one's fault you weren't diagnosed. But it disturbs me that specialists who should consider this possibility just don't have it on their radar. They should really.

[daisychained]

Hi,

When i was diagnosed with behcets i had bilateral panuveitis amongst other things, but the retina inflammation is my worst symptom.

My vision was badly distorted at first and big blank patches, i thought i would never see again... the eye doctor wouldn't or couldn't say whether it would get better or not.. but the vision settled and become clearer after about a year and the blank patches got smaller i dont notice them unless i look for them now. I think that was fluid behind my retinas but not sure.

I often have retinal vasculitus which is a lot milder and doesn't last as long since starting prednisolone, but the distorted vision comes and does settle after a few weeks now. The only thing ive been told - nothing can be done about floaters. They can be so dense i cant see my reflection or drive or recognise people etc, but they can and do settle as well.

Im 2 years into finding the right meds since diagnosis, and feel really hopeful my eyes will be ok eventually!

Take care!

[sam0511 in reply to daisychained]

Thanks for this. Vision in my right eye distorted, bit like looking in a mirror at the fair! But clear. Strange. Hoped they could correct it by smoothing front of eye, but it isn't that simple. Inflammation was in the jelly, which has contracted and pulled the front of the eye in if that makes sense. Had no pain whatsoever. Lefts eye fine thank goodness. On Azathioprine and Predisolone at the minute, and all seems stable.

[daisychained in reply to sam0511]

Is that called vitritis?? That word was on my last eye exam notes a few months back. I cant explain the distortion i had.. it was like everything i looked at was like a row of lines.. kind of lol

So glad aza is helping you atm. It didn't work for me, not sure whats next on the agenda but i see prof fortune and her team at royal london so im sure they'll come up with something else soon.

I was born with a problem with right eye, never been able to see out if it so im desperate to keep my left eye safe lol

[sam0511 in reply to daisychained]

Hopefully Aza is working for me. Desperate to get off pred...but got told off for reducing too soon! Reading through these posts I realise I am by no means a bad case, lot much worse. Difficult to explain, I have all the light in right eye, just detail blurred at the top. Can't say I'm blind in it. It is by no means driving standard but if I look directly at something its blurred, look above it and its clear. Hard to explain. Fingers crossed for your left eye.

[jzeis in reply to sam0511]

I was finally put on azathioprine after I went to a uveitis specialist 5 years into my eye problems. Azathioprine is the only thing that stopped my monthly eye flares (the anti-TNF drugs weren't available yet). I had to stop taking aza after about 8 months because it was affecting my liver, but that was enough to interrupt the flares. I've got a lot of retinal scarring and some blind spots, and had cataracts removed in both eyes. I was lucky because the surgeon did a vitrectomy (which got rid of all my floaters and debris in that eye) at the same time he removed one of my cataracts. Here's info on vitrectomy: allaboutvision.com/conditio...

Everyone with BD should check their vision through an Amsler grid, and let their ophth know if there are any wavy or missing lines: amd.org/the-amsler-grid/

Hope that helps.

Joanne

[sassyscript]

I was diagnosed with and earlier this year. I don't quite remember what happened but I My peripheral vision in both eye's were impaired. I now have 20/20 vision. I was at st. Mary's hospital. Good luck

[mtmunster]

Hi, I'm really sorry to hear about your vision problems. I also had visual problems right after I was diagnosed 2 years ago -I had haemorrhaging behind both eyes. I was really upset at the time as the consultants told me unless it improved on its own there was no treatment for it. My vision was quite blurry -I couldn't have driven or worked with it. Thankfully though within about 10 weeks it improved and I was back driving after about 3 months. So try not to worry-often given time and the right meds the problem rights itself. I have 20/20 vision now in the right eye and just shy of that in the left eye. I was treated at the time with steroids, cyclophosphamide and cellcept (I've since been taken off cellcept as it failed ie the Bechets was still very active causing blood clots in main veins -but my sight hasn't deteriorated). So I guess I'm saying its early days and try not to worry -I know I was very worried but tried to stay positive and that helped a lot. I wish you the best. 🙂

[sam0511 in reply to mtmunster]

Thank you, it helps to know I am not on my own with this.

[LoveMy2Girls]

Hi Sam,

I can also relate to your sight damage. I have had Bechets for about 10 or so years now, but I always experienced very mild symptoms ( genital and mouth ulcers with occasional body and head aches). I experienced my most severe flare up in January of this year. I was diagnosed with retinal vasculitus after suffering a retinal hemorrhage. Like you mentioned, it came on quickly and painlessly. I was so scared. I was put on azithiroprine, prednisone and infliximab immediately. I was hopeful that my vision would improve and it did slightly, but I still have a blind spot in the corner of my left eye where the hemorrhage occurred. My retinal specialist say that the vision will not return in that area and to think of it as a "stroke" of the eye. Fortunately, my body had responded well to all of the medications and I haven't had any flares since January. My doctors are hopeful that my symptoms will stay controlled with the medications, but no gaurentees can be given. I'm glad to have people other people on here to share my story with. It's helpful to know im not alone. I get very scared at times too..,some days are harder to get through than others. I'm still adjusting to living this way and I fear losing more of my eye sight too. I just try hard to stay positive and have gratitude for each day I'm here, knowing there are no promises in life. I wish you the best and I'm glad we have each other to share these experiences.

[sam0511 in reply to LoveMy2Girls]

Many thanks for this. It has really helped to read your post. Your experience is exactly like mine, same symptoms. I am also on the same medication etc. I have been feeling very alone with this. My outlook on life in general has changed completely, not sure I like it. I miss the old me, ever optimistic of what the future will hold. Now I just fear it. For the most part, and to the outside world I am just carrying on. Behind a closed door it is very different. I don't think friends - so called - and family can really appreciate what this disease is. Because I look ok, and can function I don't think they really think I must be that ill. My diagnosis and partial loss of sight in one eye has all come within the last 7 months. Behcets had been mentioned before but in total I had been having symptoms for at least 10 years. You have probably gathered today is a bad day!! I cannot fault the NHS and my consultants. Fantastic people. Again thanks for your message, it really helps. x

[Haksta]

Hey Sam,

So sorry to hear about your recent diagnosis with Behcets and the loss of sight in your right eye, your story sounds quite similar to mine and I was also only diagnosed earlier in March of this year, after many years of joint problems thinking it was only arthritis since 14, I started getting ulcers down below at around 25 but they never appeared often so I was content in living that way since it didn't bother me so much, I was wrongly diagnosed with herpes and the minimal appearance led me to believe in that, so I guess I'm saying I was also unlucky like you in thinking it was something else and no doctor ever being able to pickup on my symptoms correctly never mentioning behcets at all, I'm sure you wish now that you had taken that on board as you were told it may be due to behcets before but I totally understand what you're going through, how scared you're about the future and how difficult vision loss can be. The pessimistic view that grows on you can really feel like a curse!

I was diagnosed at 30 after severe inflammation in the back of my left eye, along with a retinal vein occlusion which has left my sight very damaged and blurry in that eye & I've also now developed floaters too, it was almost completely blind when I woke up that morning, I was told it will never be the same with no guarantees of outcome and even though it has improved slightly, just like you since this has happened my whole outlook on life has changed, I had been a very active humorous ever happy positive strong minded person all of my life and now I only ever seem to think pessimistically with no optimism to look forward to for the future, I feel like my personality & character has changed for the worse so badly that it really hurts. Anyway I know this has dragged on now and I'm talking about myself a little much but this is my first reply to a post as I felt I can relate to you so much and I just wanted to say you really are not alone on this. Like you my family and friends do not seem to understand me fully so it's funny how a stranger at times can maybe even understand you more than the people that are close to you!

What a funny life it is for us with this disease, one moment your life is perfect and the next it can be flipped right over! everything you once knew is changed to something you don't quite understand, can't comprehend or easily adjust to.

I'm on Pred & Aza plus Colchicine,

dying to get off of the steroids too!

I hope this brings you some comfort in a way that your pain is truly heart felt and by no means are you all alone in how you feel...

I truly wish that you regain your vision eventually, as I'm also ever hopeful now for this one day! Good Luck with the op..

Take Care

Hak

[sam0511 in reply to Haksta]

Thanks for your reply. It is a help to know I am not the only one. I have just got back from the hospital and things are looking positive! Steroids to be dropped by 1mg per month - yay! - but I have been told that the scar tissue at the back of my eye is bad and that if it isn't removed it will possibly pull the retina away. But by operating to remove it, there is a good chance it will improve the vision in that eye. They showed me the scans and I can see exactly what they mean. All is quiet in my eyes now with the inflammation gone. Would this be an option for you? I haven't had bad ulcers in my mouth since June when I started the Azathioprine, and the ones below never appeared again after I stopped taking anti-inflammatories which without doubt triggered them. I have been lucky with joint pain, just had a bout of thumb joints hurting but have eased now. I am beginning to realise that I have been relatively lucky, as I am not as bad as some cases. The only reason I was diagnosed and treated for behcets was because the consultant discussed my case with a specialist team, and they all agreed it was even though the pathergy test was negative. Would it be worth you asking the question over your eye? My treatment is at the Derby Royal and my consultant is Mr Patel. I am assuming you are in the UK? If not I would push the question. Let us all know how you get on. x

[Haksta]

Glad to hear things are looking positive for you and wish the op goes well. Yeah I'm in the UK under Prof. Stanford & his team at London St Thomas. They've told me that the haemorrhage is in the middle where the macula is - which is responsible for central vision, I think that's why it still remains blurry without much focus as the inflammation has settled. Although Prof. Miles Stanford is one of the best optholmologists in the UK with a great understanding of BD, I may ask to get referred to the London Centre of Excellence as I don't always get to see him one to one & he's also at the behcets COE in London. I'm going to get a second opinion by Prof. William Ayliffe on Thursday, I want to see if injections may help the RVO as with the vein blockage there's not much else that can be done from what I've read and been told. As you mentioned it's like a stroke of the eye. My retina could have detached if the inflammation persisted so I understand and I suppose it's better for you to have the op done sooner rather than later. I've had more joint pains since being on the steroids long term but I'm down to 10mg from 60mg so getting there slowly!

Wish you all the best, let us all know how it goes likewise. x