Sight damage

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.

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  • 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.

  • 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.

  • 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?

  • 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.

  • 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.

  • 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!

  • 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.

  • 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

  • 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.

  • 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

  • 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

  • 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. 🙂

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

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