I am soon forty, and I never had any ulcers or health issues more generally until a month back. Then I suddenly got tonsillitis, then serious aphthous ulcers, and a couple of weeks later uveitis on one eye. It could be other reasons too than BD, but is there anyone who had a similar story of where it just emerged out of nowhere?
I read the stories of everyone here. I feel so sorry for the problems you face, and I get courage and strength from seeing how you cope with it. Thank you.
Hi linusd
Sorry you are so suddenly feeling unwell with all your symptoms and now on the journey like myself and many others of trying to figure out all these answers.. what is it (BD or other) and why did this happen to me? I too was curious how others symptoms began!
For me, I took quite unwell in May18 after a severe throat infection (probably Strep) which had me feeling fluish and sleeping around the clock for a few days. 2 weeks after I developed Erythema Nodosum rash on my lower limbs with severely swollen ankles and feet. Within days my major joints ankles, knees, wrists and elbows become so tender and the pain was excruciating, I became bedbound and immobile.
At the time I was going through a particularly stressful period with work, having just started a new job 10days prior and which was immediately very demanding.
The GP initially didn’t know what was going on with me, my inflammatory markers were fairly high and the belief was I’d developed a PSRA (Post Strep Reactive Arthritis) - they tried antibiotics and anti-inflammatory drugs but it was only when they put me on oral steroids that my symptoms began to ease.. quite quickly too. At one point due to my raised bloods they were going to admit me to hospital but then didn’t and that is my one regret - that I didn’t go to hospital at this time so Rheumatology could assess me at my worst.
I’ve been on oral steroids eversince - over a year now and gained over 2 stone in weight. However, when I reduce the dose down the joint pain comes back. I had continued working as the steroids took the pain away and gave me masses of energy initially.
Then once again, last October, work became extremely stressful and boom I developed ulcers - oral and genital plus increased joint pain and lots of migraines. I was already under Rheumatology review since September going through the tests for autoimmune such as Lupus and Sarcoidosis.
In frustration at feeling so unwell again I googled my symptoms and the first suggestion was Behçets! I seemed to fit the description perfectly so took the details to my next Rheumatology review along with photos of the ulcers. Coincidentally I’d been having ulcers occasionally (approximately 3 times annually) both oral and GU for around 8years - had been to my GP who humiliated me by suggesting checking for STI when I was in a long term stable relationship! So I never went back when they occurred just stuck out the pain. Perhaps if I had got tested back then and ruled out STI/herpes they would have discovered it was vasculitis/inflammation much sooner!
So I never tied all the symptoms together until last October, however, I am still not confirmed as BD as there is no test as you know. I am now on the drug pathway though, having tried Colchicine (now stopped as made no difference), Azathioprine (stopped after 3 weeks due to severe GI symptoms) and now 2 weeks into Cellcept (Mycophenolate Mofetil) along with low dose steroids and anti-inflammatory painkillers. I’m not feeling any benefit yet but it can take 3-6 months to notice improvement and at least it’s not making me sick! I’ve been off work since the end of November as joint pain is now daily and less controlled on the low dose steroids and I suffer from extreme fatigue. These are my worst symptoms along with occasional oral and genital ulcers. However, I’ve attended Gynae on 3 occasions- the first 2 appointments the doctor told me from my photos the ulcers looked like Behçets (I’m not even sure if he has dealt with anyone with Behçets before!!) and at the last appointment he has randomly changed his mind saying he thinks they’re just caused by an ingrown hair!! - I said ‘what every 3 months for the past 8years???’ I am hoping some day they will fit me in to have a biopsy- I have contacted them on 2 occasions to do so and they have been unable to offer me a timely appointment and missed the opportunity. I am feeling very frustrated that Rheumatology had changed my ‘working diagnosis ‘ from ‘possible’ to ‘probable’ Behçets and now Gynae from a photo (which looks no different to all the other photos I have logged) are ruling out Behçets for ingrown hair!!
I would ideally like a referral to a CoE for their expert opinion, however I live in Northern Ireland and can only be referred by a consultant and I believe it’s quite a process to apply for funding. Meanwhile I keep on trying to keep on! I am now feeling the stress of being unfit for work and already off 6mths so my SSP is running out. The financial burden just adds to the weight.
Like most people I wonder ‘Why Me?’ and grieve the person I once was and my old life!! Let’s hope the drugs start working soon!
Good luck in your journey!
Please have your b12 levels checked. Chronically low levels can also cause ulcers
I’ve always had oral ulcers at any given time. The kicker for me was when they came with the genital ones. That’s how we finalized it.
I’m sorry you’re going through this it can feel like very defeating battle. This group is wonderful to get you back to your not alone and feed you with great information.
I purchased Joanne Zeis book
Behcet's Disease (MyModernHealth FAQs) amazon.com/dp/1938549406/re...
It’s amazing! I was having doctors tell me my rash/ulcers were herpetic and ulcers are not!
Well oddly enough they can be herpetic formation!! Joanne’s book really helped me prove my symptoms did match the Behcet’s diagnosis it’s amazing how not all Behcet’s symptoms are the same. We can run different paths in our illness. Mine travels cranial nerves, eye, mouth, gut, private’s and repeat. Some flares last longer bur I have literally been in a flare since 11/2017 it just goes from one area to the next..
I wish you well and my mantra was
Hold
O
Pain
Ends
Take care.:.
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