Hi, a couple of years ago I was given a diagnosis of Behcets. My main symptoms were night sweats, aches, dizziness and exhaustion. After going through a few specialists I end up with a rheumi who asked if I had ulcers. I said I'd had mouth ulcers since I was a kid and genital ulcers intermittently since my 20's. No one ever checked the ulcers. For the last year my symptoms have increasingly worsened. My main issue is gi stuff. Waking 2/3 times a night with a severe pressing pain in my upper abdomen, stomach pain, diarrhea and constipation, hot flushes, nausea, reflux and wind, feeling spun out and dizzy with some mood swings. Severe fatigue. My eyelids have been dry and sore, dry mouth and throat (sometimes waking up with it stuck to the roof of my mouth). Taste changes (had 4 months where everything tasted bitter). Ear ache, usually between ear and jaw at back. Stiff neck. Itchy patches of skin. Some like little pin pricks in exactly the same spots which have bothered me for years. Waking with pins and needles type tingling in fingers arms etc. Also what I think is recurring balinitis.
Phew, that's most of it I think. Anyway, after seeing a gastro for a load of tests which came back negative. He says he has no idea what is wrong with me and has given me varying doses of different meds. My primary consultant after mentions sjogrens to him was pretty dismissive. Saying maybe it is but there's nothing you can do to treat it apart from replacement saliva/ tear treatment and then just went back to talking about behcets.
Having looked up sjogrens now, my symptoms actually seem much more in line with that than Behcets. But who knows. Anyway I was just wondering if anyone else has similar symptoms (esp with the GI and abdominal pain or balinitis) and how you got diagnosed or any treatments that had helped.
Just desperately trying to get to the bottom of what's been wrong with me for the last few years but increasingly seems that if you don't put the pieces together yourself, no one else is willing to do it for you. Thanks. Chad
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Chad01
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HI, some autoimmune syndromes have symptoms that are similar, also if you have one autoimmune disease you can have others. Also some medications can give you these symptoms esp. dry mouth and skin rashes. Cant say if you have SS but its worth getting your thyroid (Look on thyroid site for specific tests) and Vit B12 checked, as these also run along side these diseases.
Keep working to find out why you get these symptoms, once we know why we can handle them better, even if no cure. All of us go through this despair with docters, many years trying to get answers.
Thanks for replying Holly. I'll ask my doctor about those tests when I see him.
Hi Chad - you poor baby. My heart and nerve endings go out to you. I wish I could help, but I just have SS, no behcets... And the symptoms I have do not really include that much in digestive or ulcers... except nose sores if untreated...
If find it curious that so many physicians act as if Sjogrens is a "non-disease"...
I think part of the reason that Sjögren's is regarded by many doctors as a "non disease" is because a) it is often a side kick to another autoimmune disease which can be more effectively treated and b) it's relatively newly identified compared to the others and c) because the immunesuppressant drugs that are often used for the other diseases can increase our risk of Lymphoma. It would help if doctirs were more honest about these reasons though rather than trying to belittle our disease and it's symptoms.
Regarding Behcets - I have a friend with this who speaks to people on the phone helpline for Vasculitis UK. She is on one of the infusion biologics for hers I believe. You don't say what treatment you are currently taking for Behcets? If you are untreated then perhaps it is very active in your guts? I believe GI issues are a common aspect of most types of Vasculitis. And as you have one autoimmune disease it's quite likely that you do also have Sjögren's as a secondary to your Behcets.
I have seronegative (i.e lip biopsy positive) Sjögren's and was previously diagnosed with RA. I have really bad GI problems too of the type you describe. Ranitidine twice daily really helped me with the foul taste and I'm on Cellcept/ Mycophenolate in the hope that my symptoms improve. There is a possibility that I may also have Scleroderma.
It would be so much better if they ran more trials and did more research into Sjögren's so that there are at last some more targeted systemic treatments. But good topical ones are important too I've found.
Thanks for your really helpful response. I just feel like banging my head against the wall a lot of the time. Mentioned SS to my rheumi who was pretty dismissive and said that 'yep it was a possibility but nothing can be done if it is, so I should just think again about starting behcets treatment (which tbh I'm still a bit unsure about as a diagnosis). Luckily my gp has ordered some more bloods for SS so maybe that will give more of an indication. I'm sure, like a lot of people on here, it's an exhausting process having to keep battling for a diagnosis when you feel so ill. Thanks again for you help. Chad.
What meds have you taken for Behcets so far Chad? The thing is that there are quite a lot of people who have a very multisystem type of Sjögren's that goes well beyond the dry eyes, mouth and fatigue. People like us are given immunesuppressants, steroids and even biologic drugs. So it just isn't the case that there are no disease modifying treatments for Sjögren's and it certainly is the case that many of these treatments would be the same as those for Behcets. The one I'm on is called Cellcept/ Mycophenolate. But there's Hydroxichloraquine and Methotrexate or my friend is on Influximab infusions for Behcets. I know that Behcets often presents almost identically to Sjögren's so if I were in your shoes I would trust the diagnosis of Behcets because it's so rare that it is taken more seriously by rheumatologists than Sjögren's. Also, primary Sjögren's puts sufferers at a uniquely higher risk of Lymphoma so this is another reason that rheumatologists are less keen to treat it aggressively. They don't tell us this though but it's on most of the Sjögren's public information pages.
Thanks for the helpful advice T. To be honest my diagnosis for behcets seems to have been mainly based on mouth and genital ulceration. Mouth ulcers I've had since I was a kid and gen ulcers since my mid 20's. Despite the fact that I said I was pretty certain I was diagnosed with herpes then, as it wasn't on my medical record it was ignored. No tests for hsv have been carried out since which I find a bit odd since this appeared to be the clincher in the behcets diagnosis. I'm going to ask my regular doctor to carry out a blood test to diagnose this. It nearly appears that my rheumi is so keen on it being behcets that it's blinkered him to other possibilities and this has tainted the way other consultants have viewed it. My symptoms for the last year have been extreme fatigue, stiff neck, joint pain, recurrent balanitis (increasing in severity each time) gritty dry eyelids, abdominal and gi problems ( I wake up with serious pain in a small point at the bottom of my breast bone, nausea, dizziness, dry skin, itching on skin( usually the same places), taste changes, dry throat/ mouth/ tongue, mood changes, terrible brain fog, night sweats. Probably forgotten a few but these conditions seem to be running at the same time. Anyway, I've had some bloods done for sjogrens to see if anything is picked up there and am tempted if the hsv test comes back positive to start again from scratch. It just seems difficult finding people who have the time or inclination to put in the detective work. I'm not currently on any behcets specific meds though I had a dose of steroids which didn't make much of a dent. Currently on lots of gi meds, muscle relaxants and stuff to help me sleep. Thanks for you help T. Hope your own condition is manageable.
Hi Chad. I totally understand what it feels like to get landed with the wrong label and then no one questions it apart from you. I had same with RA for five years! But my Vasculitis helpline pal with Behcets says that there are few other diseases which can cause genital and mouth ulcers apart from Herpes - so once you exclude this I wouldn't be so sure that rheumy is wrong. All the symptoms you describe tarry with what she experiences - particularly the GI ones. Good idea to get blood tests done again but there is one fairly specific to Behcets I believe - I had this done a few years ago and so I know there are specific tests which, if positive confirm Behcets and if negative, don't rule it out. I would insist on testing for Sjögren's, Behcets and Herpes if I were you. Take care, Twitchy
Hi TW , why do you think rheumy would treat primary sjogrens less aggressively . Would more aggressive treatment leave you more susceptible to lymphoma?
I don't think this would apply to Rituximab W because it's the main treatment for Lymphoma. But certainly drugs that are primarily immunesuppressants, like the one I'm taking, make a person more at risk because it says so on the info sheet. It's always a balancing act though. My Sjögren's is not serum positive for Ro and La so there is probably a different connective tissue disease going on for me and the drug I'm on is intended to prevent or slow down organ involvement principally i.e kidneys and lungs. The mechanisms of Mycophenolate are completely different to your treatments so please don't worry.
I think they know more about Behcets as it's a rare type of Vasculitis that is taken pretty seriously whereas Sjögren's is assumed to be just a benign nuisance for the majority of sufferers and treatments are usually just the necessary topical ones and sometimes Hydroxichloraquine. X
Thank you TW , it's something I worry about like yourself . I dont know much about behcets just what ive read on Internet , it would appear its difficult to diagnose as well .
Presently worrying far more about other stuff as you know W - but as I say our Sjögren's has shown up different ways and mine is less likely to go for my lymphatic system than it is for my blood or nerves - I think it co-exists or is secondary to another CTD so just other things keep worrying me!🙄x
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