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 😊
Written by
TigerLily42
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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.
Hi, thanks for your reply. Oh, that's great to know about the physio referral! I will look into that and see if I can do a self referral then. Thanks for the advice with everything.
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!!!
Hi, thanks for your reply. Yes, Liverpool said it doesn't mean that I don't have it just because it is incomplete. I am also hoping, like you said, they I don't get any more symptoms and I improve over time with the correct meds, lifestyle changes etc. Thanks for the advice and I hope you are feeling ok with everything.
I too was initially diagnosed at my first visit in 2018 with incomplete Behcet's. I was already on mycophenolate for a different disease and so this continued temporarily and colchicine and dermovate ointment was added. Soluble betamethasone tablets for mouth ulcers were also added. I was seen by the Dermatologist at my next visit and he and Prof Moots confirmed I did fulfil the criteria and so my diagnosis changed to " Behcet's ". I stopped the mycophenolate as it was ineffective, I'd already previously had azathioprine and methotrexate so I went on Biologics. They will treat you as is needed and it doesn't matter how long it takes for you to become full Behcet's , if you do , all that matters is that you are treated.
Hi, thanks for your reply. Yes, I am already on Colchicine and have the Betamethasone tablets and an inhaler for the mouth ulcers (God send when I do have them!) and also the ointment for down below. I am now back on the naproxen, as turns out it wasn't the meds causing my upset stomach. I had a gastric stomach bug. So just unfortunate timing. Joints already feel a lot better after a couple of days back on it. Azathioprine was mentioned at my last appointment too. Yes like you say, doesn't matter what we are diagnosed with, just that we get the correct treatment for our symptoms. I know it is different for everyone who has Behcets as there are so many different symptoms! I hope you are doing ok with everything.
Yes on the whole I am reasonably stable. Ups and downs at times but nothing I can't cope with. If you do start azathioprine be very careful with the sun, cover up and use high sun screen.
Glad to hear you are doing ok. Ahh ok! I am as very pale skinned anyway, so always have to use a high sun factor even in this country! Thanks for the heads up though
My experience with Colchicine is that it really helps me with joint pain. I never thought about the ulcers. I have been using Otezla with colchicine and the Otezla really helped with sores and debilitating back pain. Before Otezla I had difficulty lifting and doing basic movements now it is so much better. Since Colchicine helps with my shoulder, hip and hand pain it probably helps with my back also. My primary care says that all her patients with Behcets do well with colchicine. I do have major flares and then need additional steroids. Not sure if this was helpful but I found both meds allowed me to live a little.
Hi and thank you for your reply. Yes, they have said the colchicine should be helping with the joint pain. Maybe it is to a point as can't remember what the pain was like before I started taking it! I just know I am still suffering with the pain (stops me being able to take my dog on long walks, doing what I want at the gym etc!) Hoping the naproxen works, as it has eased my pain in the last couple of days. This is very useful thank you and I hope you are getting on ok.
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