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!
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LisaNZ
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Hi welcome to the group! I had persistent and recurring uveitis for 2 years but only one episode since the Humira started working. As you said you've been very lucky to receive such prompt and comprehensive care! Hopefully this will prevent any permanent damage to your eyes. Good luck with everything! X
I was told by my first rheumatologist that smoking had been proved to lessen symptoms of Behcet's, I started having symptoms at 16 told that both genital and oral ulcers were through stress and really dealt with them myself for decades, I quit smoking 19 years ago and my health started to get worse and worse, joint pain, more ulcers, fatigue just horrible, I was put on amitriptyline and given pain relief and muddled along with this continuing with the ulcers, tonsillitis and recurrent joint, muscle and body pain with little interest from anyone. I saw every consultant you can think about still no idea about the ulcers... tonsils out 2014, cameras everywhere, MRI's, xrays, scans... and then in 2016 I was diagnosed with Ehlers Danlos and in 2017 Behcet's. I note you mentioned connective tissue problems this is associated for me with Ehlers Danlos as well as the joints, tendons and ligaments... I was told I had fibromyalgia then not and again and given diagnosis of costochondritis.
Eyes have never really been an issue for me up until this last year I have started getting blurring ,not all tge time, I have also experienced this last year a number of outer peripheral vision issues that lasted for a short time only, I too have floaters and blepharitis dry eye was diagnosed by optician last year, I have a Ophthalmology appointment at the end of the month so will be relieved to have my eyes check correctly for the first time.
Lots of people have no eye issues at all, its good to get yourself checked out and I believe the process using a slit lamp is normal. The main thing is to monitor yourself write everything down about every symptom of Behcet's take photos and discuss openly eveything with your consultant, a lot of us have triggers some might be food, periods, stress, lots of situations, getting to know your body and it's reactions will help.
I was unable to tolerate Colchicine it was going really well with the ulcers but it didn't quite fully help me, did nothing for my joints or muscles, it was increased and I had a toxic reaction so taken off it, then tried steriods and that didn't help now on Azathioprine which so far has been the best. I would say to anyone new to Colchicine to get a blood test done to make sure they are ok, my GP's completely discounted blood tests, I was only on the drug 10 weeks and my GGT levels ended up building into the 100's if you feel ill in any way get your blood checked to include liver and kidney function too.
Good luck with managing your condition and really pleased you appear to have some pretty switched on specialist.
Thanks so much for your reply and advice Gillian! I can’t imagine dealing with the ulcers by myself with no diagnosis - it was such a scary experience for me! I saw someone else’s recent post about tracking so have downloaded an app and am tracking EVERYTHING - from water and sugar intake to my level of stress and fibro symptoms. You can add your own symptoms so I’ve just tailored it to my situation
I also have costocondritis, which I had attributed to fibro and the connective tissue issues I have. One of the specialists said that the fibro symptoms could actually be behcets, but my feeling is that I have both. Mine is mainly tendons - for example I have chronic foot tendinitis and ganglion cysts on the tendons inside my foot, terrible ITB pain and regular tendon issues throughout my body.
I’m glad your new meds are working better than the others you’ve tried - long may that last! :). I asked my dr for blood tests and will get those done next week - I hope they are ok cos aside from some minor gastro issues I seem to be tolerating colchicine quite well!
Do you have joint hypermobility syndrome/ Ehlers Danlos? Just some of the things you describe fit so much with this condition, I have this too didn't know it was a condition until I was diagnosed in 2016.
I hadn’t heard of that condition until you mentioned it (thank goodness for google!!!) but I definitely don’t have hypermobility haha. But you’re right, some of the symptoms don’t fit neatly with fibro (or behcets) which is why I think I have that generalised diagnosis of connective tissue disorder.
I was also really nervous about the eye involvement, i think it just depends which cards you get. I havent had any issues besides the dry eye, which i have punctal plugs, and those were put in years before my first flare.
I get the slit lamp test done yearly to see for inflammation.
I think if eye problems do arise, its more of a how early did you catch it, to start treatment- but more so overall, being mindful of your body to not let inflammation completely take over.
Joanne zeis has an excellent book, as she has the eye involvement, its well worth the read and has many resources and tests and etc.
oh also forgot to mention the smoking, yes- theres a component that theyre not exactly sure why but helps with oral ulcers- read a study a few years ago with HIV patients and ulcers and smoking. Ive stopped (i like to use that word because stopping and quitting are two different things in my book) many times when my thrush was bad or was generally unwell- but now that i am well- i do love to indulge in a glass of red wine and a cigarette. I felt i had to give up A LOT of my liberties, and missed out on my fun "20's" that this is the last of my indulgences, so shhhhhhhhh and let me be. HAHA
Sorry to hear you had such awful bout of ulceration. But wonderful t have a speedy diagnosis. I was diagnosed aged 24 and am now the grand old age of 41!
I had acute iritis (front of eye affected) 4 or 5 times when younger , all treated with steroid drops then needed systemic treatment. After my worst flare with the mouth and other ulcers, I started on immunosuppressant and things started to calm down. I was on azathioprine and low dose prednisolone for nearly a decade I think. You may find colchicine is all you need for a long time.
Try not to worry too much about your eyes. Read up on the facts from Behçet’s UK charity website (and worth joining them for support and to meet other patients and free annual conference etc), maybe print out the sheet about eye disease and know where it is in case ever need it. Today most cities have an eye casualty or a specialist they can call to A&E so you know where to go if have symptoms like red eye plus pain with light (photo sensitivity) or loss of vision. I was in the middle of Thailand when I had acute iritis, but found a local hospital and was treated appropriately and my vision is ok now in that I can work, drive, read, I still wear contact lenses and swim and try to enjoy life!
The Behçet’s centres of Excellence have eye specialists and always ask about your eyes and vision. They can be proud that they have helped massively reduce numbers of patients with blindness in the last 3-5 years. Truly significant. Better awareness and assessment has helped in the UK.
Yes a Slit lamp can see the front and back if the eye plus look for inflammatory cells in the vitreous.
Thanks so much for replying :)...I am in New Zealand and am admiring the UK’s centres of excellence from afar! I also travel a bit so it’s heartening to hear you were able to get examined in Thailand. Am also really grateful for your confirmation that slit lamps can pick up the posterior uveitis issues!! I forgot to mention I’m also photo sensitive, though probably wouldn’t meet the medical definition. For years I’ve worn sunglasses even on cloudy days. I also wear fake clear glasses at night when it’s windy because otherwise my eyes water terribly.
Before proper treatment for myself, My eyes would be the relatively mild, yet still annoying, harbinger of bad news to come. Relative to others' eye experiences, mine are mild: conjunctivitis, episcleritis, scleritis, redness, light sensitivity. A combo antibiotic/steroid eye drop for a few weeks and the clock would be reset until the next bout. For whatever reason, this last year I have not had a single eye issue. It feels like a crap shoot, control over which I have not.
As an aside, I chew nicorette gum and am loath to give it up. Definitely enjoy my wine and beer as well with no untoward effects.
Having a good ophthalmologist is really important to monitor your eyes and have a quick response to anything that 'pops-up'. If your eyes get irritated, do not wait. Make an appointment for slit-lamp asap.
Those genital ulcer biopsies must have been absolute hell. Pat yourself on the back. You are doing great.
You are soooo right about the genital ulcer biopsy - I literally screamed the whole time he was putting in the local anaesthetic. The one on my arm for the nodule thing was fine though - didn’t even blink haha
Here were the statistics from Prof Stanford at London Behçet’s Centre of Excellence:
50-70% of Behçet’s patients have eye involvement.
Less common to have the posterior eye affected but that is the more risky area.
Only 1% of patients in the Centres lost functional vision last year (assume functional ability is to do what you usually can at baseline eg read, work, drive) - this is the success story partly due to assessment but also the treatment with the biologic drugs like infliximab and Humira.
Often eye problems develop within 3 years of mouth ulcers appearing. Prof fortune always says if you get the mouth under control, that helps everything.
I am hot on this topic, (or slightly “hyper-aware”!) as my daughter was diagnosed with Behçet’s and had all the ulcers aged 4. She is now 8 with no obvious eye problems.
Thanks Legomum - it must be heartbreaking to see your young daughter with behcets. I cared for my mum before she died (she had lupus) and it felt like a constant battle to get people to take the time to consider her complex issues...not to mention the trial and error nature of these autoimmune-type diseases. I wish you (and your daughter) all the best
Hi, I’m very similar... age, medical conditions and medication. I’ve been fortunate so far, diagnosed last year but have always had ulcers, noticeably so in the last few years. So no eye involvement yet picked up on slit lamp exam, had some odd things, floaters, blepharitis but so far so good. So don’t worry too much, they keep a check on the eyes & it’s not a given you will have involvement. As for me, I have the mucotaneous leaning so you could be similar. Family situation also similar, so whilst I don’t have the genetics behind the diagnosis the family history is interesting... so just be aware of the symptoms going forward & keep a photo diary. I was also told opticians run an emergency system if you need it, so don’t wait for a GP appointment if this is another route available to you if you do get symptoms. Best wishes
Thanks so much for your reply. Your post made me remember that a month before my hospital admission for the the ulcers I had a sore eye - some kind of little inflammation dot thing under my eyelid at the top of my eye. It went away on its own after a few days. I think I was expecting some kind of massive eye problem, but maybe I have had an issue and just not connected it. Scary - but as you say I will try not to worry too much.
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