Sjogrens forums

[Berninakate]

Hi all I'm at the early stages of being investigated for Sjogrens and I am finding it difficult to find much information or support groups. I am UK based and am currently gate crashing your forum as it was the only one I could find listed on health unlocked. Is this a rare condition ? I'm led to believe that it is the second most common autoimmune connective tissue after rheumatoid arthritis but still unable to source much info and research. Thanks for any pointers you are able to offer.

[HollyHeski]

Youve landed on the right site, I am also from the uk, I have secondary SS, my primary being APS/Hughes syndrome (another autoimmune disease). We dont have a site in the uk but this site is international!

Just post your questions - answers will follow.... welcome!

[Berninakate in reply to HollyHeski]

Excellent thanks for the swift reply Holly

[Hidden in reply to Berninakate]

Hi there. I'm in Scotland and was initially diagnosed with RA but have now been rediagnosed with primary Sjögren's by lip biopsy and +ANA.

For information and a great helpline the BSSA is a really good charity - but unfortunately they don't have an HU forum, so I tend to use Lupus UK's HU community - which you can join by browsing communities in the bar above. These two communities and NRAS have helped me through a lot over the past seven years, from misdiagnosis to rediagnosis. I count many on them as my good friends and am hoping that, if enough of us ask, the BSSA will start their own HU community too so I can enjoy getting and giving support to those with the same disease as me with the back up of a national charity and those with experience of the NHS. I'd stay here too though because it's great! I tend to avoid FB Sjögren's groups because the information given out is often very sketchy and they can get acrimonious?!

Please do tell us a bit more about yourself, your symptoms etc.

Twitchy

[Hidden in reply to Hidden]

Ps re your question about the rarity of Sjögren's. It's relatively common if we group primary and secondary together - but as a primary disease (with slightly different biochemistry) it is quite rare. It's also under diagnosed - particularly in younger people, children and men. But from what I can gather - it's equally overdiagnosed by opticians and dentists and by those suffering from Sicca Syndrome - who often self diagnose in the absence of diagnostic criteria. People will say "there's no cure so why bother having an invasive lip biopsy - when you can still have this disease and be negative". There's some good sense in this argument actually but, for myself, I like incontrovertible proof. And luckily for me I have it! You can't get an official diagnosis and will be unlikely to be treated with Hydroxichloroquine or be monitored regularly by a rheumatologist in the U.K - if you don't fulfil the diagnostic criteria for Sjögren's Disease (as I call it!)

[Berninakate in reply to Hidden]

Thanks Twitchy all great information I will take a look at Those suggestions too. A little more about myself - (health wise) i hope you have a spare half an hour !!!!

I contracted a virus two years ago that affected my CEntral Nervous System, thought to have been Meningitis. Whilst they were testing to identity what was going on I underwent a brain MRI and a full ct body scan. During the first scan they identified white matter lesions caused by a demyelinating condition as well as lumbar puncture which identified unmatched ogliclonol bands (spelling may be wrong) which meant something separate from possible Meningitis was occurring in the cns and causing brain lesions. The second scan (full body) identified severe inflammation and narrowing of the large and small bowel. Further follow up weeks after identified a stricture of 1mm (narrowing in the bowel) which led to urgent surgery to remove the affected area of the bowel and after biopsy I was diagnosed with Crohn's disease . This followed many years of misdiagnosis of irritable Bowel syndrome. During this two year period severe pain and fatigue was disabling and chronic and earlier this year I was diagnosed with fibromyalgia (meds have hugely helped). Late last year liver function tests that had repeatedly over the course of a few years returned and flagged as abnormal. Having questioned my gastro further Indepth testing revealed a diagnosis of stage 2 Liver Fibrosis which came at the end of last year. Throughout the entire two years and before this time I had felt unwell, severely fatigued and often with chills and repeated fever. I was researching MS which my neurologist considered but unable at the moment to diagnose. A chain of events which included looking at MS research which mentioned many people misdiagnosed with MS when the cause was later discovered to be Sjogrens. This came at the same time as a diagnosis of dry eye and inflammation of the tear duct and along with a gp consultation whereby my mouth was so dry I was unable to talk properly. A week later everything seemed to fall into place and I began to wonder whether Sjogrens was a possibility . I also have vitamin d deficiency with parathyroid issues, my thyroid function has been borderline, i had also been advised recently of reduced kidney function tests for the past 6 months, constant pain in the gland area of the neck and sever pain also higher up behind my ear (thought to be my parotid gland) all of which made me suspect something systemic was happening. My ana tested neg but I see my rheumatologist early September. Kate

[bambino4]

Hi..sounds like were lucky in Australia then as i have primary Sjogrens and see a fantastic Rheumatologist every 6 months so im well monitered for any further complications 😀

[Berninakate in reply to bambino4]

Hi Bambino thanks for three reply. Hopefully I should receive similar monitoring should I receive a diagnosis of Sjogrens I await to see rheumatologist in early September.

[Hidden in reply to Berninakate]

Hi again. Your story is so familiar to me! I have come to Sjögren's via a different route but my worst symptoms have been the MS-like presentation (I have white matter and paired oligloclonal bands).

I was misdiagnosed and treated aggressively for seronegative RA in 2011 because that's how my Sjögren's presented at the time - but the neuro and Sicca symptoms long predates the bilateral synovitis. I do have confirmed Autoimmune thyroiditis i.e hypothyroidism and longstanding IBS-c which Methotrexate and others plus going dairy and gluten free seemed to address. Plus I've had Sicca since I was a kid. But once off Methotrexate (severe nausea) this gastritis symptom returned as severe abdominal pain. I was later found to have mild liver, kidney and pancreatic issues that come and go.

My new rheumatologist says that my IBS-c is actually most probably dysmotility caused by autonomic dysfunction - similar as found in people with MS, MND, Diabetes and Parkinson's. I have classic Sicca, ent issues, tinnitus, Raynauds, Hypothyroidism hypertension and widespread small fibre neuropathy plus plenty of osteoarthritis and inflammatory arthritis - and awful fatigue with high inflammation levels in my blood very often.

So, although my main presentation is neurological - I would say I have just about every feature of Sjögren's that there is - to a greater or lesser extent. But my status is seronegative although I am 100% lip biopsy positive and do now have a clear positive ANA - but the pattern is nucleolar which is more commonly found in people with Scleroderma or Polymyositis. I'm currently on the highest dose of Mycophenolate - which I admit that my stomach is starting to seriously struggle with.

Please do feel free to contact me by PM if you want to exchange contact details or tell me where you are located. If I can help I will - although off to work in my artist studio just now!

[Space99 in reply to bambino4]

Hi from Brisbane.

[bambino4]

Yes, im sure once you have been properly diagnosed you will be given the same care we get here!😊

[Hidden in reply to bambino4]

With the NHS currently in crisis it very much depends on meeting the diagnostic criteria for a rheumatic disease and whereabouts in the U.K you are. Sad as that sounds it's the reality here - unless you have private health insurance (which most people don't here) or are rich enough to pay to go private.

[SjogiBear in reply to Hidden]

Some people on the FB forum I follow have paid privately to have a 'one-off' consultation with one of the leading UK doctors for Sjogrens. I am lucky enough to actually fall into the 'catchment area' for such a rheumatologist but I understand that costwise it's around the £120-150 mark so it might be worth considering if your local area is a bit lacking in Sjogrens expertise.

[Berninakate in reply to SjogiBear]

I'm lucky that my husbands work does have health insurance - so I am seeing a specialist rheumatologist although his area of expertise is lupus rather than Sjogrens - but I'm guessing a specialist in systemic autoimmune is a good start.

[Berninakate]

Hi autoimmune is so so complex isn't it, sounds like you've also had a rocky ride. I M lucky in the sense that this all happened within the past 2 years however I have been symptomatic for years which have worsened over this time. Nice to hear from you I am also an artist ! and I live in the Hampshire coast . It has been my neurological issues that have most concerned me and driven me to identifying what on earth is going on with me whilst the neurologist takes the approach wait and see.

[merriwin]

The US site is also good for information.

[Berninakate in reply to merriwin]

Thanks Merriwin what is the website for American site ? Many thanks

[Hidden in reply to Berninakate]

My husband's family are all from this area in Hampshire too! So you're an artist too - that's great! I'm in the process of applying for a funded PhD using my art practice as a starting point. Scary but exciting - my focus will be on the neurological symptoms of autoimmune diseases I think.

Sjögren's World Forums - "living with Sjögren's" - and also the Neurotalk forums have both been extremely useful for me - although they are very international so quite a lot of the drugs, approaches and expectations are very different to ours in U.K

You may well have read both of these articles, but just in case you haven't: hopkinssjogrens.org/disease...

‪sjogrensworld.org/mandel.htm‬

[Berninakate in reply to Hidden]

Wow PhD fabulous - what medium do you work In. Where does your husbands family come from ? Perhaps you could share some of your work would love to see. My specialism is textiles, however I'm moving into some mixed media pieces at the moment.

[Hidden in reply to Berninakate]

I will do some day soon. I am a painter by training but have dabbled a lot in embroidery - have sometimes been described as a "rogue stitcher"! Quite a few art uploads on Lupus UK HU over the years!

axisweb.org/p/tumimandprend...

[merriwin]

It is a FB page Sjogrens Syndrome Support Group. 9000 members !!! There is also another US one .. just Sjogrens Syndrome. Hope they help.... I actually have found that I am nowhere near as bad as many others so for that I am grateful.

[Berninakate in reply to merriwin]

Thanks merriwin I will take a look - all the best

[25clai]

Hi there,

I was diagnosed with severe primary sjorgens just over a year back. The first rheumy I saw fobbed me off even though I presented with positive ANA and RO antibodies . its taken me a year to get my kidney function stabilised. I would suggest you study the NHS markers to get a diagnosis and get support. There are various tests for sjorgens , the presence of RO antibodies is supported , as is lip biopsy in my experience. My GP sent me to an endocrinologist for investigations initially . They were not expecting me to test positive on anything and treated me like the worried well until my results came in.

The BSSA has diagnosis info , I joined it , then regretted it, as the online forum isn't great, but you can glean loads of info off the website to fight your corner.

To be honest, the most relevant support I have had is from my fellow sufferers on health unlocked . I am on a number of forums due to the invasive nature of sjorgens on the body...I hope you get a clearer picture soon of your diagnosis. I remember it was a frustrating time trying to get a diagnosis and a good rheumatologist.

Claire

[Hidden in reply to 25clai]

Hi Claire - have you contacted the BSSA about getting a UK HU community started I wonder? I and others are working hard on them so all support for this idea would be much appreciated! X

[Berninakate in reply to 25clai]

Thanks Claire our cases sound similar with lots of areas of the body affected. I did quite a bit of research and write a long document to my gp quoting all of my research which backed up every point I made to my gp. This was so I did not get fobbed off and it worked as she agreed with the points I made and referred me immediately to a rheumatologist. But it was my gp that ran my original ana and others over a year ago which came back negative however she has also been privy to everything that has happened and gone wrong over the past two years and really should have queried a systemic involvement before now. Thanks for the information I am still researching and identifying links with my other symptoms and I await my app in early September to hear what my rheumatologist think. Thanks again Kate

[Beverly]

Hi we have lots of information on our website sjogrens.org.au.