Ulcers/ sores

Hi, I feel like I'm going mad and really need advice but no one seems to be able to help. I have ulcers in the back of my throat right now, yellow blisters in my nose, I'm fatigued and just want to cry, I have painful heartburn in my chest and middle of back. My head is sore where it is thinning and Iv now got a sore down there! Do any of you get sore lumps down there too? Is this to do with lupus or is this something else? Iv been on the phone all day trying to talk to doctors or a nurse but no luck xxxx

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  • Hi johubble,

    Do you have a Lupus diagnosis? The reason I ask is that there is a rare Vasculitis variant called Behcets syndrome which causes ulcers ( both oral and genital ). It shares a lot of other symptoms with Lupus.

    Here is a link to some information on it

    vasculitis.org.uk/about-vas...

    Happy to answer any questions you may have.

  • Hi, thank you for that. The doctors are treating me for Lupus as I have lupus symptoms but it's not showing up in my blood work. They have just upped my hydroxychloroquine. My vasculitus marker was up but they didn't think it was important so it's funny that u mention this. I will ask them direct and see what they say. Thanku xxxx

  • I have a Behcets / spondyloarthropathy crossover. The reason I lurk on here occasionally is that Lupus was a rule out for me at one point.

    Behcets is a difficult diagnosis to make as there is no auto antibody associated with it. If your ANA etc is negative then they need to be looking at the mimics and ruling other diseases in or out.

    Are you seeing a Consultant as its not a diagnosis that a GP can make?

    I am involved with Vasculitis UK and help out on their helpline. Please feel free to phone or e mail me

    vasculitis.org.uk/helpline

    There are very few things cause both types of ulcers and the other symptoms you have. There are 3 Behcets Centres of Excellence in England ( London, Liverpool and Birmingham ), they are nationally funded and don't cost your GP anything for a referral. Hydroxychlorquiline won't treat Behcets if it is that. I would take photos of the ulcers and any other skin lesions you have. Unfortunately we need to be very proactive sometimes to get a diagnosis.

    Best wishes

    Lynn

  • Thank you Lynn, I'm 40 mins out of London. I have pics of my mouth ulcers in my throat. I have a pic of my lower one but not very good lol. I find it quite upsetting that I'm having to do so much investigating and talking about personal things to strangers feels like the doctors don't know or care. I'm so glad for these forums! Thanku for ur advice I will ask for a referral xxxx

  • The London C of E details

    behcets.org.uk/london-centr...

    I think they have a 12 week waiting list at the moment so the sooner you get referred the better.

    A brown asthma inhaler sprayed directly on the ulcers ( 4 times daily ) can really help them to heal, both types!

    Dr Nicola Ambrose at UCLH London is another Consultant Rheumy with good Behcets experience. If you are near Cambridge then Addenbrookes has a specialist Vasculitis and Lupus clinic headed by Dr David Jayne which is excellent as well.

    It took me 4 yrs and about 8 second opinions all over the UK to get my diagnosis. My GP was excellent and did all they can, it was the Consultants who let me down. The answer and effective treatment are out there somewhere. Please don't give up. Xx

  • I currently go the Addenbrookes Lupus clinic to see Dr Reese. He wants me to see a different consultant who deals with fibromyalgia as I'm still fatigued and my skin is painful to touch on my legs etc. I will call them tomorrow to update them. Thank you so much for your help and advice I would never have found this out on my own xxxxxx

  • Here is the link to the Addenbrookes Vasculitis clinic.

    cuh.org.uk/vasculitis-and-l...

    Your current Consultant will definitely know them so I would push for a referral to rule out Behcets. They have a lot of Behcets patients and are used to diagnosing and treating it, of course not saying that's what it is!

    Good luck and let me know how you get on. Xx

  • Have you asked to have the duty doctor call you back?

  • My doctor was supposed to cal Monday but didn't and then the nurse was supposed to call me today but hasn't. When u talk to the receptionist they don't sound bothered. I'm not sure if I'm making a big deal out of nothing? Xxx

  • The down 'there' us probably a yeast infection. I had one when I was pregnant years ago. They aren't common but can happen when you're run down. See your gp for at least that one because it's pretty painful! 😣 I believe the others in your nose and mouth can be from lupus but if you have yelliw or white ones I the back of your throat it could be a throat infection like strep. Best get checked out! Xx

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