Incomplete Behcets?!

[TigerLily42]

So, my question is, has anyone on here been diagnosed with incomplete Behcets?!

At my 2nd CoE appointment at Liverpool in July, I was! They are saying that as I don't fulfill the ISG 1990 criteria (I have 2 out of three symptoms), that they cannot diagnose me properly. However, under the ICBD criteria, they say I have likely Behcets! It's all very confusing.

They say I still warrant enough symptoms for them to be concerned and keep me under there care (have my next appointment booked for Oct).

They are medicating me as though I do have Behcets - Colchicine, Betamethasone mouth wash and ointment for down below, steroid inhaler. I have tried etoricoxib and celecoxib to see if this helps with the joint pain, but neither did anything. I was on naproxen until yesterday. This has caused the most horrendous upset stomach and after speaking to the pharmacist, I was advised to stop taking it and make an appointment with my doctor (trying to get this sorted, but my doctor's are not the best!) I was given a steroid injection at my last appointment and this was amazing, I was pain free for 3 whole weeks! Which was the first time in months! They did tell me this was only a one off though.

I have been trying to get a physio referral via my docs for the last 2 months (as per Liverpools request), but am getting nowhere with this. So I have booked a private appointment for next week! Hoping this route will help and the meds will only be if absolutely necessary.

The mouth ulcers and genital ulcers have all but stopped since I have been put on the colchicine. The ones I do get now are the best I have ever had! Currently have ulcers in both places at the moment though and feeling awful, so think I am going through a flare up.

Just keen to hear if anyone else is experiencing the same as me with being diagnosed with incomplete Behcets.

Thanks in advance 😊

[Rose483]

Liverpool diagnosed me with incomplete. Hasn't really affected anything treatment still the same. Just as you say not all 3 symptoms. As a physio myself I would advise you to contact your local NHS physio dept as many now accept self refferal save paying privately. I would contact liverpool re your azathiaprine rather than gp. It can have terrible side affects initially you have to take with food and split the dose. For me they settled down after a few weeks.

[Nlrsuperstar]

Behçet’s is a disease diagnosed by a process of elimination. Doctors will look at all aspects of your case to rule out all other possible diseases and differential diagnosis’s. Based on that, your current and past symptoms, often your genetics, your previous medical history they then can then make a partial diagnosis or “Behcets disease, at least forme-fruste”. Or a full diagnosis.

If your disease progresses (like mine did ) your doctor may then change that diagnosis to fit under the larger Umbrella of Behçet’s.

A partial diagnosis doesn’t mean you don’t have Behçet’s nor does it change the treatment, it just means you don’t fulfill the criteria to meet all the requirements set by medical standards for a complete diagnosis as of now.

My hope for you is you continue to improve and not meet the criteria!!!

Best to you!