Behcet's Syndrome Society
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Corneal Ulcers - What To Take

Last week I knew I was starting a flare, of what I'm not sure at the moment because although I already know I have Hughes and Sjorgrens Syndrome I'm now being investigated for Lupus and also referred to the London Hospital because I'm told I may have Behcets.

I started off feeling generally unwell, you know the typical flu like symptoms, then I got more specific pain in joints, starting with hips, then wrists, and hands, fingers and thumb knuckles, elbows. Really bad fatigue. I felt like I had a low grade temp and I had a sort of rash on my arms face and chest which looked like a cross between prickly heat and German measles (I can get that a lot).

On Saturday night I got a row of little bumps come up under my bottom lip and a couple on the top which feel very sore. I think they are what you could call tiny blisters. The bottom of my lip is now tingling all the time and is a cross between an itching feeling and stinging. Then yesterday my eyes started hurting and by last night were really sore and gritty and have what are the classic signs for me of corneal ulcers.

Does any of this sound like Behcets to any of you lovely people? If so what do any of you do when you get these ulcers in your eyes and blisters round your mouth?

My GP just wrote the referral last week so I was wondering how long it is likely to be before I would hear from the London Hospital. In the meantime I have no real support as my GP does not know what to do with me so I'm left to my own devises. I have a good Opthalmologist who could treat the corneal ulcers in isolation which he normally does with antibiotic drops but that was before he or I had any idea it might be because of Behcets. The drops he puts in my eyes to have a good look round usually make me feel really ill and last time I came out in a rash.

Any comments or advise would be appreciated. Thanks.

5 Replies

Oh and I forgot to mention one other important thing also that started last week, stomach pain, really bad which they are thinking may also be little ulcers too. What do you take for those because omeprazole does not seem to do much good and paracetamol just takes the edge off.


Oh you poor dear, where to begin. Sadly all these symptoms could be one of many diseases including Behcets. Until you see the right doctors and get a definite diagnosis it's impossible to find the correct meds and treatment. You say you have been referred to the London Hospital, which department ? If there is any chance this could be Behcets, it would be far better to be referred to the Centre of Excellence. As to your other illnesses could these be causing symptoms you describe? Sorry I can't be of much help but I have suffered with BD for almost 27 years and it took me 12 years to get a diagnosis. Obviously there has been much improvement since then, the COE's, treatment and better knowledge by more doctors. This is a great site for advice in Some areas but we are not doctors, and can only help in what we know. I am sure you will get many more answers and we are always here to listen.

Take care

Hugs, Smiles



Hi there Star13

Anything to do with eyes really shouldn't be left to chance. I know your're waiting for an appointment in London but not sure where you live.

There is a 24hr walkin eye department at The Western Eye Hospital in Marylebone London and I have given you a link to their services. That clinic is under the heading of Ophthalmic accident and emergency department. It is for people with eye problems that cannot wait for a Dr's referral.

I have been to them before and they were brilliant and I got seen within a couple of hours. They will examine and treat you and fax any other Dr's with the info.

Please don't just wait....hope this helps



Thank you both. I am waiting to go to the CofE in London. I do remember there is that Hospital along the Marylebone Road, I have seen it many times when passing. I also have a Consultant Opthalmologist that I can contact who is very good locally but will certainly bear the Hospital in mind if I can't get hold of him.

As for the symptoms being down to other conditions, well Corneal ulcers can be part of Sjogrens and the stomach problems if it was not ulcers could be part of Hughes depending what was causing the pain. I suppose the only way of really knowing is to stick a camera down when you are suffering but as is always the way when you get to see the Doc you dont have the symptoms!! I was just wondering if my symptoms rang any bells with anyone.

How long do the referrals usually take to come through does anyone know?


Hi Star13

I hope you manage to see someone soon about your eyes.

I also have sjogrens and this is known to be associated with Behcets and the symptoms you describe can also be a sign of behcets. But with Behcets there is no test to confirm one way or another. It is down to your medical history and a knowledgeable Doctor to piece this together and exclude other possible similar diagnosis.. The Centres of Excellance is the place to go for this and hopefully this shouldn't be long to wait.

I know how frustrating it is trying to get a diagnosis as it took many many years of misdiagnosis to finally confirm behcets by which time I was very ill indeed. Thankfully you will not have to go through what I did because of the COE and other consultants being more experienced with Behcets now.

Jean is the support worker for the London C O E and you could contact her through the private messaging under her contact name of londonsw. She is very friendly and can help you with assistance and advice [non-medical].

Good luck



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