Possible bechet’s, feeling deflated

[Pug33]

I’m not sure where to start, but I recently was referred to rheumatology with possible lupus/bechet’s. All bloods have come back negative so far. The consultant I saw the first time seemed to be really good. I was told if I had any further symptoms they could possibly do the skin prick test.

So I currently have a very large ulcer in my mouth which is extremely painful it even hurts to lay my head on the pillow. I have been getting ulcers every 2-3 months for the past year. The first couple of occasions I had four or five small ones and the last 2 times it has been one but large and very painful.

I have had one genital ulcer about 2 months ago which was also painful. They swabbed it for herpes which was negative.

The general symptoms I have always had are: joint pain, fatigue, skin sensitive and can come out in a rash in the sun if strong, I have history of recurrent miscarriages, some chest pain on certain activities, raynauds, one episode of skin lumps under armpits.

The past 2 weeks sorry if it’s TMI but I have similar symptoms to thrush but with no discharge and it feels more burning/prickly feeling.

When I saw the rheumatologist today it was one of his team and he completely dismissed my symptoms and said some people get ulcers and to put bonjela on and see my GP about my other conditions. He said I would have to have weekly or at least monthly ulcers to even be considered for bechet’s.

I just wondered other peoples experience and if my symptoms are similar or if the doctors are right and that it is unlikely?

Sorry for such a long post.

[TonyWT Partner]

I've sent you a private message. Chair Behcet's UK.

[LalSD]

Pug33, I am so sorry to read about your symptoms. But for ulcers in the mouth I found anbesol baby gel/liquid which works best. I also use corsodyl at night and put this liquid on the ulcer. By morning they are gone. Only for mouth ulcers. I have similar symptoms with Lupus but family history is Behcet's. Wish you quick recovery, L

[CecilyParsley]

Oh I am so sorry that you have met one of the most unhelpful Rheumatologists.AI conditions take a significant time to diagnose. Even when you do get a diagnosis it can change with every Rheumatologist you see.However, there are some things that you can do to help yourself. Keep a symptom diary because in Consultations invariably we come away with things we should have mentioned but forget. Take photos of any rashes, ulcers that you get so that you have tangible evidence for them to look at. I know that it is a difficult and demoralising process but you are not alone . My Rheumatologist advised me that if I am flaring more than three or four times a year I should consider Immunosuppressants so the advice about weekly ulceration seems wrong to me. If you can ask for a second opinion. Good luck xx

[gillianTS]

Cannot stress enough how important it is to chart your symptoms each and every one, photograph everything as backup and when you have built up enough evidence send your chart in as simplified as you can and attach your worse photographs. Send this to the consultant that you expected to see.

Having suffered since my teens with Behcet's and battled alone all of my life until my 40's when I again mentioned these symptoms, and gave the rheumatologist my chart and photographs, she had absolutely no hesitation giving me a diagnosis for Behcet's, and yet her colleague next door who I paid privately to see a few years older had absolutely no idea about why I had genital, oral ulcers, along with a plethora of other what I felt were related symptoms. So many people have a nil result with a prick test it really needs addressing by a specialist who had intimate knowledge of Behcet's.

Search out a specialist who is completely experienced in Behcet's and if you can afford to make an appointment don't hesitate. I will however say on my journey I had appointments with gynaecologist, dermatologist, rheumatologist, gastroenterologist, neurologist and all never recognised and joined the dots with one another.

Evidence of your journey is key it really was the only thing that helped me after years of just turning up to appointments.

The consultant you saw is right that ulcers are not just associated with Behcet's and not that I am agreeing with him my own journey has been continuous ulcers throughout my life several times a month.

Do some research on other conditions associated with your symptoms and see if you fit with any of these. Lupus, coeliac disease, crohn's, vitamin B12 or iron deficiency, these and others were all considered on my journey.

This resource is a good place to look at images of different types of ulcers, skin conditions etc and might be helpful to you:

dermnetnz.org/topics/mouth-...

[Icefire]

Hi Pug 33. Sorry to hear of your troubles. I disagree with consultant saying you need ulcers any more frequently than 3 times a year.

I have had bechets most of my life but took at least 24 years for diagnosis!!

Fatigue and mouth ulcers were my most prominent symptoms for a long time. There is a link between mouth ulcers, fatigue, miscarriage and lack of methylfolate. I feel much better and have less mouth ulcers for supplementing it, just a thought. If you choose to do so make sure it's methylfolate not the synthetic form folic acid as some people can not absorb it. If you are on medication you should check for interaction, although I believe lots of meds can make you even more deficient. If your a purest lots of organic dark green veg probably your best option for increasing your intake!!

For me joint pain correlates with gluten and skin rash dairy.

Managing stress and getting good sleep also very helpful.

Exercise really helps me but I have to build up very gently to avoid burn out. (And rest up to recover).

What ever the Drs come up with. I wish you luck. Unfortunately Bechets is little understood and symptoms cross over with other autoimmune conditions. I also think within our group our symptoms are quite diverse!!