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 😊