I’ve been diagnosed with Behçet in 2020. From that point on it’s been a rollercoaster of doubts and misunderstandings between doctors and I can’t still understand what of my symptoms are or are not Behçet related.
I was diagnosed in Portugal but I live in London. This past weekend I had a huge episode where both my hands started swelling a lot, they were burning hot, covered in red spots and the joints were very painful. It quickly escalated to the whole body. The day after my hands were so swollen that I couln’t close them or even use my phone. I took a corticosteroid and the swollen disappeared but I start feeling my fingers and toes super numb and with very low sensitivity. I could barely feel anything.
This morning that sensation was gone but once again I woke up covered in red spots throughout my legs, feet, hands and arms. Just left the A&E and the doctor told me it is acute urticaria, but he doesnt know if it could be related to Behçet as he knows very little about it.
Also my blood and urine tests from 3 weeks ago showed that my inflammation levels are very high.
Did anyone ever get urticaria symptoms related to Behçet?
help much appreciated, I am feeling quite lonely in this journey and it’s hard because it seems very little professionals know about it.
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The Royal London Hospital is a centre of Excellence for Bechets. I believe Prof Fortune is the lead there. She is excellent. Is there any chance you can ask to be referred there by your GP? They can do an urgent referral so you can be seen quite quickly.
I had the severe swelling in my hands and feet and my joints were just as you described. After about three months, the swelling and pain calmed down, but i had this problem for maybe 2 to 3 years. Then it went away and I didn't have it for several years, but then it would come back and give me some troub0le again for a few weeks or months and then go away again for a year or so. It was so painful that I couldn't turn my head from side to side, I couldn't hold my baby, I couldn't hold a pencil and I was in college. They gave me Feldene at the time and colchicine later on. Nothing really helped though. The best thing was rest. I'm sorry you are going through that. Best of luck to you on this journey.
Yes! I've had recurring bouts of chronic urticaria approx. every 7 years since age 19 (50 now). My hands swell so I can't do anything with my fingers and my feet and ankles swell and stop me wearing shoes. My skin gets so bad it looks like I've been scolded (see pic). Sometimes my throat swells too. Some of the spots leave bruises when they fade. Anti histamines cleared it up at first, then I needed antihistamines and steroids then last time I had antihistamines, steroids and cyclosporine. I'm now on azathioprine and should be due an attack any time now. There is a type of urticaria associated with behcets - vascular urticaria. I had a biopsy taken from one of the spots last time but they said it wasn't vascular so unrelated; however there are so many people on this forum who have various symptoms matching other people that aren't said to be related to behcets that it makes me wonder whether there are other symptoms which the experts just don't know about, or even whether there's another similar condition which hasn't yet been discovered. Good luck x
Hi… only after I answered I saw your response and I agree 100% with you. We all share so many symptoms “unrelated” with Behcet’s… I always wonder if all the things I have that the doctors dismiss as being from Behcet’s are actually at least related to a different response to things…. So being secondary of having Behcet’s. Take care
Hi I am so sorry you have to go trough this agony, I have had this, the Prof treating me called it Urticarial Vasculitis as cherie1w74 mentions here too. I have also suffered a stroke related to the vasculitis. This was my neglect for not taking my medicine as I should have, not the Prof for his treatment plan. Frogge gives you the best advice - Rest - and Star13 has your treatment plant covered with Prof Fortune or anyone at The Royal London Hospital where they have the centre of Excellence for Bechets. I hope you find an awnser soon, take care
Hi there, I had one very bad episode of urticaria. My blood pressure dropped and I had other symptoms and had to go to the hospital by ambulance. Long story short, mine was probably related to a viral infection. However, I pushed to get a biopsy of the lesions that would answer if it was vascular, relating to my Behcet’s. It came back negative as a vascular and inconclusive for other things that could explain what happened (that is why the conclusion was that it was viral). This happened in February and I am still going through tests as I lost consciousness, had a small seizure, etc. Also probably not related to Behcet’s. The neuro said that when a response as severe as mine happens all the symptoms can be explained . I will (finally) have an MRI (brain) on this Sunday. So, sorry for the long post, but in conclusion, I suggest you ask for a biopsy of your lesion. Hope this helps and you feel better soon.
So sorry to hear how difficult things have been for you. Hope things are improving now.
I had a very bad attack of urticaria several years ago, which ended up covering most of my body. I felt very unwell with it. It was diagnosed as solar urticaria and came after a time of great shock and distress, which I’m sure set things off.
Although I haven’t suffered another bout since, I’m very careful to avoid exposure to strong sun, including through windows too. I didn’t know if it was related to the Behçets, so it’s interesting to hear of other people’s experiences. In my experience, the doctors - even consultants - generally dismiss anything that isn’t listed as a recognised diagnosable symptom.
thank you so so much for all the responses. I am so sorry we are all going through this. Reading your testimonies makes me believe I am not crazy and that what I am feeling is not just in my head.
My GP has referred me to a rheumatologist that has asked new blood tests to be done, not sure for what? So yes, I am still waiting for news.
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