Double trouble

HI

this is my first blog.I would like to know if anyone else has sjogrens syndrome as well as behcets. there are many overlaps with these 2 autoimmune diseases which made diagnoise very difficult.I have had primary sjogrens for about 30 years, but only had behcets confrimed 18 months ago .the behcets ulcers are horrendous making my whole mouth, tounge lips, and throat swell,I look like quozimodo on a good day and eating is immpossible.Colichiine tabs really help. I have been on immunosurpressents for at least 11 years so i was surprised i developed another autoimmune syndrome

Thanks Carol

4 Replies

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  • Hi Carol

    I've had all of the Srogens systems for years and they tell me I have sicca sydrome but won't give a definitive diagnosis of Srogrens. I've also undergone tear tests (intermediate results) and a lip biopsy which was inconclusive. Recently I was diagnosed with Bechets after having what I'd thought was RA for 15 years. so I do think that its possible to have several autoimmune diseases at the same time.

    Its a confusing and complex world and all I wish for is that the specialists would listen to our whole health picture to join up the dots and complete the jigsaw puzzle we live in on a daily basis.

    I wish you all the best is managing your health.

    kind regards

    Vicki

  • I am not diagnosed with Behcets, but do have SLE and Sjorgens. Always had nose and mouth blisters along with awful throat ones that extend down. Now had 6 months of 'downstairs' ulcers which make life very miserable.

    Been told it is very rare and that they are not sure what to do. Trying to get some suitable treatment sorted at the moment.

    I hope your treatment works and I wish you well.

  • Hello Carol,

    I am sorry to hear that you have been bombarded by this stupid autoimmunity-- it isn't fair to have one autoimmune problem, but to have more than one, is just plain cruel and undeserved!

    I don't have Sjogren's, but I do have another very rare autoimmune endocrine disease called "Addison's" which has caused adrenal failure (basically its an autoimmune attack to the adrenal glands and causes them to no longer function-- they produce the body's natural stress hormones called "cortisol" and "aldosterone" which basically keep the body functioning from muscle tone, blood pressure regulation, temperature regulation, to heart function) and I also had an autoimmune attack to my pituitary gland called "Hypophysitis" which has left it extremely shrunk in size and it sits outside its normal location, which causes it to not show up at all on brain MRI or CT scan! (they call this "empty-sila" syndrome) along with the Bechet's Disease. Doctors have all told me that I am a complete medical mystery that should be studied because its unheard of to have these two conditions (which are endocrine) along with Behcet's (which is systemic connective tissue/ vasculitis). Even to just have either 3 of these alone is extremely rare enough.

    Like Vicki said, many of the symptoms of behcet's overlap with other autoimmune diseases, especially SLE Lupus, Scleroderma, and Mixed-connective tissue-- The main big difference is that there are no autoantibodies found with Behcet's and usually a negative ANA, where as with Lupus, there is autoantibodies and a positive ANA. I think if you have symptoms of Lupus as well and test positive, then it is is possible that you can have both seperate diseases. But it is also possible to mistake the problems Behcet's causes for any number of other autoimmune diseases.

    Before I was diagnosed, I was told that it looked like I had Lupus or some other underlying connective tissue disorder. I was actually diagnosed and then undiagnosed with Lupus and MCTD 6 times (and undiagnosed). Not one single doctor had even mentioned the name "behcet's" to us in the 8 yrs that I was so sick and searching for answers. Then two days prior to my appt. with a new rheumatologist, I was watching an old episode of a t.v show called "Mystery Diagnosis" and the lady on it had Behcet's-- I remember thinking "oh my goodness! this is me!" so I searched the internet frantically and printed off a bunch of info, so I was ready with back-up armour to fight this new dr. for a diagnosis (I was not going t leave his offcie until he agreed to at least test me for it!), but to our surprise, right away he said that it looked like this rare disease called behcet's. Luckily, he had seen a couple of cases of it during his residency at Mayo Clinic in the States, so as soon as I mentioned the ulcers and my eye problems to him, he knew right away. It also helped because none of my bloodwork had ever showed signs of autoimmunity and then he tested me for the HLA-B51 genetic marker which I tested positive for in the end. He explained to me that even though I had many symptoms of all these other autoimmune diseases, I didn't actually have all these seperated conditions-- its all just from the Behcet's which mimics so many other diseases. I think that's his favourite saying though, "it's because of the bechet's"-- sometimes he doesn't take things serious enough or really care to listen to me tell him my concerns about my symptoms because he says they are just "trivial" things caused by the Bechet's.

    The world of autoimmuntiy is so confusing and very much is a big, complicated jig-saw puzzle as you called it, Vicki. I think people are lucky if they only have one disease like Lupus or Behcet's (but not lucky to still have this disease); but for many, one autoimmune disease often means more and more problems to come. They really need to start researching autoimmunity and the immune system istelf-- rather than just putting focus, money, time, and effort into one disease like MS. I don't even heard of much research being done on Lupus, even though many people now days have heard of it and/or know of someone with it.

    And yes I also agree with you Carol, how it does seem so strange that you still developed Behcet's even after being on immunosuppressants for years-- maybe you have always had the Behcet's (or at least since before you were put on those meds)-- just a thought anyways.

    I hope that things begin to settle down for you with the ulcers and everything else. Best wishes and take care :) Keep up the good fight on this autoimmune and behcet's battle!

    -Jenna

  • Hi Jenna

    thanks for your reply, i found it very interesting.I am so sorry you have so much to cope with, It certainly puts my problems in perspective.I agree with your comment that i probably already had bechets before I started on immunosuppresents but as you have found, once you have a lable,in my case sjogrens,every sneeze cough bruise e.c.t is put down to that.I have a very caring young GP to thank for his research into my symtoms when everything he tried failed.He then wrote to my rhumatologist.I now have colchicine tabs and at the frist sign of my mouth breaking down i start them ,they really do help by limiting the exstent and duration of the ulcers but have no effect on fatque,headaches ect.The most important trait to cope with are boddies deciding to wage war against themsleves is a good sence of humour, i manage to retain this most!!! of the time but when every orifice is riddled with thrush and your fighting yet another infection ( all thanks to immunosuppresents) it is hard. Enough moaning

    has anyone got a family member who has behcets. My 34 yearold son has been seeing a rhumatologist with similar symptoms to me, she also went down the sjogrens path but where as i test positive for antinucular antibodies his bloods were all normal. Since i have had the bechets diagnois they have tried him on cholicine which again helps his mouth but not other symtoms His doctor thinks he to has behcets

    As i am sure you have notice my spelling is terrible but i hope you get the jist of my rambling take care Carol

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