I’m really new to this forum but I am so grateful to all the people who post questions, and to those that reply!
I was diagnosed with BD a month ago following a bout of severe genital ulcers. I think I was pretty lucky to be diagnosed so quickly after my first flare (less than a week), as it sounds like other people wait months or years to find out what’s wrong with them. Due to the severity of the ulcers I was hospitalised for five days and I was diagnosed while I was in hospital. I also had those nodule things on various places in my body, and a couple of mouth ulcers (I vape and apparently vaping nicotine helps keep mouth ulcers at bay - so far I haven’t had bad mouth ulcers- touch wood!!!). They did a biopsy of the nodule things and the genital ulcers which confirmed the suspected BD diagnosis.
Anyway, my question is about the likelihood of having eye problems in the future. It’s the part of BD I’m most nervous about. I’ve read various research studies that say eye issues can arise anytime, but often between 1-2 years from the onset of the disease. Some research also suggests that there is a 25% chance of blindness.
I had an urgent referral to the opthamologist following my diagnosis and he said I had perfect vision and no signs of urevitis, but he only used the slit lamp not special photo imaging that I understand can help diagnose posterior urevitis (?sp) at the back of the eye.
So my questions are - do you have eye symptoms, and if so, how long did it take for the them to appear after your first symptoms? Also does anyone know about diagnosing posterior urevitis and whether a slit lamp would show it up? I would be interested to know if there are many people who DONT have eye issues (maybe to give me some hope haha)
If it matters I’m a 41yo female, currently taking 1.5mg of colchicine daily (2mg caused severe gastro issues so I’m back down at 1.5). I do have a few ‘floaters’ in my left eye but the ophthalmologist said this was normal for someone of my age.
I also have long-standing fibromyalgia and connective tissue problems. My mum died of lupus and my aunt has various autoimmune things. A genetically lucky family haha (!).
Anyway, apologies for the long post, and thanks in advance!