Having noticed a few posts recently which have mentioned Sjogrens, I was wondering just how many people in the Lupus UK community have been diagnosed with the condition? I have a feeling that there are a lot of us in the UK who are not especially well served by other forums out there 
Hurrah for Lupus UK! 
(Diagnosed with Primary Sjogrens Syndrome 2012 having been previously diagnosed with Lupus or a 'lupus-like syndrome' with a low positive anti-dsDNA.)
Diagnosed today at the eye hospital. There's a coincidence
Lupus diagnosed 6 years ago.
I just feel im collecting diseases !
Hello,
I have a anti dSDNA of 24 and was previously diagnosed with Sjogrens.
I am confused as have to go to Guys Hospital for a second opinion as I may have LUPUS.
Its all so very confusing, don't you agree?
I've been diagnosed with Sjogren's Syndrome since 2005 then it crossed over to Lupus 2013
I was diagnosed with RA five years ago this month but recently rediagnosed with primary Sjogrens Syndrome. I feel that the BSSA is a good charity but have asked on their members forum why they don't have an HU too. I love it here and have lots in common with my Lupus friends of course but the issues that affect us most can be different to those affecting people with Lupus and I do sometimes feel I shouldn't be here despite warm welcome I'm usually given. I feel Sjogrens is the most misunderstood and underrepresented rheumatic disease - just assumed to cause dry eyes and mouth by many - if they've even heard of it.
Mine mainly affects my peripheral nervous system. I know I've had it for at least six years but suspect it's actually been around since I was a kid. I've had dry eyes for most of my life plus weak, lousy teeth and poor guts, skin, severe alopecia and butterfly rashes when I was a little girl.
I'm confident now about my diagnosis but frustrated that treatments I'm offered are only symptomatic ones with this disease. I have tried and had serious reactions to four immunosuppressants (for RA) to date so maybe best not to take more - but it frustrates me nonetheless.
Twitchy
Hi Twitchy,
I probably asked you this a year ago ? but have you had your B12 checked ?
Also........from an old post of yours.......have you found a 'good' neurologist yet ?
xox
Yes my B12 levels are fine thanks Freckle, although I take methyl B12 daily just in case - but it doesn't help at all.
My neurologist is okay now she knows I do categorically have a rheumatic disease which causes these type of neuro symptoms in 20-50% of sufferers. This can be in primary or in secondary form so Sjogrens may account for many more people's neurological symptoms than is yet properly understood. If you have RA or any CTD with neuro symptoms it could well be secondary Sjogrens that is causing these.
I'm glad your neuro has become 'tame' : )
Yep. I have fairly 'pathology obvious' SLE but during my last set of pathology tests I slipped an ENA in there just for back up. Pretty sure I'm flaring but its not coming out in the usual SLE tests.
I've always had the dry eyes and mouth but have never been formally told I have Sjogrens. I just converse with Doctors as though its a reality and they don't seem to put up a fight.
I'll probably cop a ear full when I see my GP on Monday. (I added quite a few tests)
I dare say you've done a lot of research on this. How does Sjogrens effect the CNS and peripheral nervous system ?
Only answer if you're in the mood. I can google it.
I'm not long back from a neuro myself - I'm having some brain problems (mild grey matter atrophy) but she attributed it to damage from a car accident 13 years ago. I've known neuro's to be wrong, especially when they don't consider the immune side of things.
I'm trying to focus on our technology just now as all pear shaped and hubby requiring my undivided attention (?!) but here are two good links that should answer your question well. There are many more re the very well established neurological manifestations of Sjogrens. Tx
sjogrensworld.org/mandel.htm
hopkinssjogrens.org/disease...
Thank you Twitchytoes, what an interesting & informative article. I was diagnosed with Sjogren's shortly after being diagnosed with SLE. My main symptoms with the Sjogren's were fairly mild compared to the SLE problems, dry mouth & eyes. Five years ago I was admitted to hospital with a rapidly, ascending polyneuropathy. Starting with poor coordination, loss of sensation & in the space of a few hours I couldn't move my legs, had no reflexes & lost some bladder control. Fortunately it didn't reach my chest. As I'd had a throat infection they thought it might be Guillain Barre (where the immune system attacks the nervous system) I had a couple of lumbar punctures, MRIs & nerve conduction studies during my two month stay. When I was able to stand again I had lots of physio to learn to walk again. I've still got weakness, decreased reflexes & loss of sensation. Have kinda got used to it but am not the same physically as I was before.
Despite all the tests they never really got to the bottom of it, & queried everything from MS to multiple myeloma. Eventually they said it was perhaps a complication of the SLE but the article has made me think the Sjogren's may have played a part. Not that it makes any difference,but it's interesting. I know people with lupus often have Sjogren's too as well as thyroid problems (I've just had my "killed" with a radioactive iodine pill - yes, I was radioactive for a couple of weeks !)
So, do I only suffer dry eyes/mouth or did the Sjogren's play a part in a much more serious problem ? Will ask consultant when I next see her (who is great, by the way - realise I'm very lucky after reading others posts) Keep well folks
Oh that must have been terrifying for you Carolyn! I had several stroke like episodes on my left side last year and my arms seem increasingly weak - but nothing nearly as extreme as you describe.
It also makes me think of Mononeuritis Multiplex or CIDP - were either of these ever mentioned or ruled out I wonder?
I'm glad that more and more people with Lupus and RA are starting to realise that Sjogrens is often far more than just dry eyes and mouth, as was previously assumed. I think the main difference between Sjogrens and Lupus is in the fact that small and large fibre neuropathyare key symptoms of Sjogrens, and also because having Lupus is more likely to lead to having cardiovascular problems where Sjogrens is more likely to cause Lymphoma.Apart from that I think there is not actually that much between these two diseases -particularly with all the potential organ and skin involvement and the fact that many with SS will have features of RA, Lupus, Scleroderma and Vasculitis and vice Versa. TX
👋👋👋👋twitchy: I can't get your mandel link to work...if you can, please try giving the link again here....😊
Yes I have primary sjogrens...
Was diagnosed with Sjogren's about 3 months ago. Haven't had much help frommy rheumatologist. All I keep getting from drs in GA is dry eyes dry mouth and nothing more. Except there's plenty more just like Lupus.
Sounds like many rheumies in the U.K too. Sorry but I haven't a clue where GA is, but assuming you mean somewhere In the States then there's the John Hopkins uni and professor Birnbaum plus the Sjogrens Foundation - all of whom now acknowledge that Sjogrens can be far more than dry eyes and mouth for many sufferers.
Maybe you should find and print off some of these learned articles from fellow American rheumatologists and give them to your rheumy to educate them a bit?
Hi I have SCLE and secondary Raynaud's and Sjorgrens which the specialist I saw in london said was not unusual to have this one more than one auto immune. Still trying to understand which autoimmune is causing which symptom. I should say their is no specialist care near me & I am paying privately to see a specialist in London 5-6 hours away to try address it all. This is my holiday this Christmas as I am travelling a day up and back. How this impacts on my health we will see....last outing I spent 5 days recovering in bed then back to work...have spare holiday this time in case I need to rest after the trip to see the doc. Great sympathy in having primary sjorgrens, it is helpful if you can go to Guys, would be delighted to have that resource near me or allowed to see them....ml
Me too...early onset Sjogrens, for decades recognised by consultants but only called sicca syndrome...my eyes & gyn organs & mouth etc were all affected from my mid 30s....way before my infant onset lupus diagnosis was recovered in my 50s & treatment for SLE begun...my Sjogrens was formally acknowledged shortly afterwards by all my multisystem clinics....now consultants think my Sjogrens is more active than my lupus...both are seroneg, and overlapping with primaries vascular ehlers danlos with dysautonomia and hypogammaglobulinaemia G,A,M + loads of autoimmune secondaries: lichen Sclerosus, simultaneous raynauds & erythromelalgia, vasculitic rashes etc etc
🍀🍀🍀🍀 coco
Lupus and Sjogrens here...Mild SLE diagnosed first in 2005, then shortly after rheumatology referred me to our dental hospital where a biopsy confirmed Sjogrens
Yes I have sjogren's following a biopsy and shirmer test on my eyes
Diagnosed with SLE lupus first then Sjogrens and Raynaulds about 12 months later.
Hi
Yep sjogerns- it's awful. & i agree with others its not as well understood as other autoimmune diseases & shocking that there is not a forum for us. Yippe for lupus forum 👏👏
Hi I was diagnosed with secondary sjogrens soon after my lupus diagnosis 3 years ago.
I have continual problems with very dry sore eyes, dry mouth and nose and dry lips.
I have decided to take matters into my own hands, as it is clear there are few definitive answers. Fortunately I have found diet to be a big aid, but still huge problems with insomnia. Anyone else with insomnia? I just ordered a pure copper plus magnet bracelet as it really worked in the past. Modern medicine has is just discovering its anti-bacterial and pain relieving benefits as copper is now being woven into hospital bed sheets and pillow cases, at least in the US. This is a great website.
Joan
Just wanted to add to my own post. I was diagnosed with Sjorgrens, but rheumy said he didn't need to see me again. Why? Said ANA tests had not changed, still showing the same level of anti-bodies. Wanted to do MRI, but I refused not wanting the enclosed space. Was I wrong? Sometimes I feel we can get on a fast speeding medical train and can't get off, plus many things cleared with my self imposed diet. Any thoughts?
Wow! I am taken aback by just how many of us there are on this forum for what is supposedly a 'rare' condition that even many doctors seem to have little or no knowledge about.
I am intrigued by the relationship between SLE lupus and Sjogrens and there does seem to be more similarity in the symptoms than is often credited. As I indicated, I was only diagnosed with the Sjogrens 4 years ago when I was 46 but my current consultant believes that I've had it since childhood: as a small child I was sickly and always had swollen glands with fever and had my tonsils removed at 5, then when I was 16 I was (mis-?)diagnosed with Juvenile Arthritis (Still's Disease) when I had joint pain and swelling that would move from one joint to another but culminated with my kidneys and liver failing . . . recovered from that and was relatively well until my 30s when, following problems with miscarriage and infertility, I was told I had lupus and APS. As soon as I turned 40, then all kinds of health problems hit me: pericarditis, problems swallowing and with my voice, breathing issues, gynae problems and generalised aches and pains - it was this that led me to my Sjogrens diagnosis. I have neuro problems too now with nerve issues down one side of my face and on the same side at the back of my head (occipital neuralgia apparently). My latest problem which has recently started over the past few months is foot pain which is making walking increasingly difficult - I am waiting to see a GP at the end of the month for this. I have no idea if it's Sjogrens related or not but I'm guessing it's autoimmune in some way.
. . . and just to make me feel even worse, my little girl who has just turned 11, has just been diagnosed with coeliac disease which seems to also have a strong correlation with Sjogrens and Lupus
Hi SB 👋👋👋👋 good points, and thanks for your story. Am more or less identifying with it.
Recently I've been at 2 events listening to consultants from my lupus clinic mention that lupus & Sjogrens are such "close cousins" that it's v hard to distinguish between them. I think we're all good examples of this...here we are, all of us with at least 2 rare conditions. I keep a live 5page, 9point size type, A4 doc on my computer of all my diagnoses, investigations, procedures, treatment plans, monitoring plans and my prescription meds (inc the ineffective & those I react badly to) + diagnosed conditions in my immediate family. My diagnoses alone cover 1 page of this, and many of the diagnoses are rare conditions. I consider myself lucky that most of these were gradually recognised before my infant onset lupus & Sjogrens were in my mid 50s
I was rereading the st Thomas's sheets re SLE diagnoses, which emphasise that immune dysfunction conditions in immediate family are important pointers when examining a possible SLE patient:
lupus-support.org.uk/diagno...
I certainly have immune dysfunction & connective tissue disorder in my immediate family, but not SLE &/or Sjogrens, although I suspect some could be diagnosed with sicca syndrome
I've got a long history of feet issues, which I share with my paternal family. Eg We have to have bespoke orthotic insoles from an early age. They all thought my version was "normal", but by my late 40s things got so bad in my feet (& hands) that I became severely disabled. Took me 7 years of being messed around by medics to discover the final key diagnosis explaining the most unusul aspect of my overlapping feet & hands conditions: tendon tightening due to SLE & Sjogrens going without daily systemic treatment. One result of this tightening was equinus contracture, a form of club foot....this was disguised by my ehlers danlos global ligamentous laxity (am bendydue to EDS, and tight due to SLE + SS soft tissue denaturing tightening). I could go on & on. If you're interested in discussing feet, here I am...ready & willing
Am wishing you & your little girl all the v best...& hope you'll let us know what your GP thinks about your feet
🍀🍀🍀🍀 coco
Hi Coco
I always follow your posts with great interest and you clearly know sooooooo much more than most of the medics we encounter with these conditions. I do feel that we often get the brush off, especially if we don't fall into neatly defined boxes for them.
Interesting what you say about your tendons giving you problems. I have wondered if it's tendons and ligaments that seem to suffer more with Sjogrens than joints. When my disease (whatever it actually is!) was active in my younger years then I would definitely get joint pain and they would be clearly swollen and inflamed. Nowadays the kind of pain I get is hard to describe as it feels as though parts of my body are just not holding together properly - if that makes any kind of sense! However, there is nothing to see that would indicate any problem - no redness or swelling for example. For the past few years I've had horrible problems with my right shoulder - the doctor says it's shoulder instability which sounds so minor but it feels as though my arm is falling away and it causes my pain down my ribs and chest and into my shoulderblade at the back and down the underside of my arm right into the hand causing tingling in my palm and fingers. Lately my feet just feel like they've collapsed - they are slightly swollen, one more so than the other - very painful when I bend my foot to walk and it hurts when I put it down too - I can also feel the bones in my foot crunching. When you try and describe any of this to any doctor, GP or rheumatologist, they look at you as if you are just weird! Maybe we become oversensitised to pain as well. I'm on hydroxy but I don't know that it does any good - I've been on it for almost 3 years now and I don't have any problems taking it but then I haven't seen any differences either.
Thank goodness we have this wonderful community on here where we can all compare notes. I really appreciate all the hard work done by Paul and his colleagues at Lupus UK as well
Such a wonderful reply + deserved tribute to LUK 🌟🌟🌟🌟👍👍👍👍
My consultants do seem to lean towards SS tending to cause this soft tissue denaturing even more than SLE does. But, as in the st Thomas's lupus diagnosis link, tendon tightening in hands & writs is an acknowledged lupus characteristic, as, I feel, is tendon tightening in feet & legs: am the living proof of this because my infant onset SLE made the tendon tightening in my legs & feet begin way before my SS got going in my 30s
In my experience, the type of medics who are most likely to understand issues like ours are certain orthopediac surgeons interested in CRPS (complex regional pain syndrome) and vvvv senior physiotherapists. My rheumatologists had me EMPHASIZE to both types of medic that I am a complex immune dysfunction & connective tissue disorder patient with overlapping comorbidities. This worked like a charm..but I had to press for an appt with the most senior physio, before which I had seen my hero prof ortho surgeon privately.
Hope something in there helps 🤗🍀
I will be making notes Coco . . . don't you worry! 
I have this type of pain in my feet and ankles too. When my SS/ RA symptoms were at their worst it was tendons in my hands and everywhere else that caused the worst tightness and pain with swelling - only my ulnar joints were as badly affected as my tendons.
I also know that tendons are often very bad with spondyloarthrirus such as PsA as well.
On the Sjogrens World link I posted above it states that 50% of primary Sjogrens sufferers have secondary RA and at least 25% of RA sufferers have secondary Sjogrens. In fact SS is even more common with RA than with Lupus so I've read in Wallace's Sjogrens book.
It sometimes seems to me that those with both diseases don't realise that Sjogrens could be the more severe disease causing RA like symptoms which often affect tendons as part of synovitis I believe. There can also be crossover or identical synptoms to MS and MG for some. Not to mention kidney,liver and lung involvement and of course the increased risk of Lymphoma.
Not only the nuisance rheumatic disease that some seem to imagine?!
Good points twitchy: eg the SLE & SS caused tendon tightening in my spine & my feet/legs especially...this has also resulted in synovitis in the 3 synovial joints in my spine (the only synovial spinal joints: sacrum (2 sacral joints) & the v top spinal cervical joint adjoi in the skull. Also, the synovial joints in my knees, ankles & feet, + bursitis along with mortons neuroma in the metatarsal joints of both feet. My right foot & leg are so severely affected long term by overlapping immune dysfunction + connective tissue conditions that I have CRPS (complex regional pain syndrome.)
Oh you poor thing - I always feel bad when you describe your problems BC - they are so multiple and heavy duty 😔
I don't know if anyone here uses the World Sjogren's Forums Living with Sjogrens? I find this a very helpful and active forum although not very many users from UK I suspect. There is a question just now relating to the difference between RA and Sjogrens Arthritis and apparently the main difference is that Sjogrens synovitis/ RA is non erosive and there is less swelling. Of course the same thing applies to Lupus so I don't know how you could ever know which is responsible for yours.
But SS arthritis presents almost identically to RA in terms of bilateral synovial joint and tendon pain and this usually includes the hands. This is me it a tee along with the MS type of SS. X
Hi twitcheytoes could you send a link to this forum? World sjogerns forum? Xx
Thankstwitchy😘...I feel much the same about you
And I feel I've got off lightly mostly,despitemy life of all this multisystem stuff. I've always kept my health probs in perspective & been inspired to tough them out cause have witnessed the horrors of my brave stoic husband's early onset crohns.
But by the time my immune dysfunction & connective tissue disorders were finally diagnosed I was in a v dark place despite my clownishness...coping thanks to decades of therapy & discovering lupus uk...which includes all of you here
Thanks for those joint details + the Sjogrens forum link 😘🍀😘🍀
👍😘🍀
To quote from the Mandel article just in case people didn't catch the link I pasted; "Systemic lupus erythematosus and central nervous system involvement have shared many characteristics similar to patients with central nervous system Sjogren's disease. This would include multifocal neurological manifestations. Focal deficits appear to be more common in Sjogren's, but seizures more common in lupus. Concentration and cognitive disorders are common to both. In addition, the presence of vasculopathy and microinfarcts in both brain and spinal cord may be difficult to distinguish between Sjogren's and systemic lupus erythematosus.
Other central nervous system disorders that can be present in patients with Sjogren's that may mimic other neurological disease include multiple sclerosis, Parkinson's disease, Guillain Barré Syndrome"
That's what I've understood too...my collection of longstanding chronicneurocerebralsymptoms are par for the course...and I thank goodness I can tolerate + benefitfrom hydroxy + myco + pred because at least they damp down my versionof these SLE + SS + PID + EDS-relatedneuro cerebral probs
Am wishing EFFECTIVE treatments for you & everyone else dear twitchy
🍀😘🍀😘
Hi Coco a very interesting read, do you mind me asking about my feet ? I have had planta fasciitis on and off for many years worse in my right foot - since diagnosis of SLE last year, my feet mainly my right foot have taken a really bad turn for the worst , now been told have a large spur in right heel hence i am having great difficulty walking - the pain is now worse in the top of my foot and when I raise my toes ! Any advice you may have about my feet would be great fully received - very best wishes xx 😀
Hello...am sorry your condition is becoming more involved & severe 😕 Sounds as if you've been investigated by a NHS ortho surgery foot & ankle clinic? Or was this diagnosed by a podiatrist?
in my case, I ran a senior private podiatrist & my Pain Consultant alongside NHS rheumatology luousc& vasculitis clinic + their colleagues in ortho surgery F&A clinic:
When decades of treatment by conservative measures (bespoke fullfoot orthotics, sensible shoes, pacing weight bearing, months podiatrist treatments, antiinflammation diet, high dose vit D3, etc etc) were not enough due to the condition of my feet worsening as inflammatory process caused increased cumulative debilitation, Rheumatology referred me to ortho surgery who did a MRI and said no surgery due to my comorbidities. so for a year, my pain consultant tried 3 steroid injections based on the MRI report.
The injections gave only temporary relief, so my PC referred me privately to a CRPS expert prof ortho surgeon who refined my diagnoses & prescribed a rigourous ongoing daily physio rehab regime that relies on my SLE meds being effective. This hero said he'd treat me on the NHS should I need more help.
Most recently, Rheumatology referred me to a senior NHS physio for review of my daily rehab, which has helped a lot.
But my feet remain a constant problem demanding a lot of time, attention, common sense, cost, apprehension & stoicism 😏
I hope something in there helps...feel free to message me to discuss this more 👌
😘🍀
PS here is that st thomas's lupus diagnosis info
lupus-support.org.uk/diagno...
My goodness! I have always had horrible problems with panic attacks which continues to this day. I tick so many of these boxes - I get the awful reaction to insect bites as well - mine always turn into festering sores - plus they always seem to seek me out!
Thank you for posting this question as it is of great interest to me , I have had a very similar medical history to yourself - as a child I repeatedly had throat and gastric infections , ear ache , tonsillitis , horrendous leg ache and headache but nothing was ever diagnosed -21 hrs ago I am now 46 yrs my daughter was born and post delivery I was diagnosed hypothyroidism , I have continued through adulthood with a mixed variation of aches pains gynae probs migraines joint problems but no one ever linked the jigsaw pieces together until last year I was finally diagnosed with SLE , SS , and blow me myeloma cancer early stage - but sadly my daughter also was diagnosed at 12 years with caeliac and still at 20 has lots of health problems , low iron , gastric probs , migraine etc - thank you again 😀
I was diagnosed in 2006 with Lupus SLE along with Sjogrens. I had no saliva to swallow when asked to do so and the litmus paper that was put in my eyes came out as dry as it was first put in.
I was told to chew gum to stimulate my salivary gland and keep my mouth fresh and I was also given artificial tears in the form of eye drops.
Last year I developed a ulcer in my left eye which was very painful. Now I make sure I keep my eyes moist day and night at all times.
Hello Maureen...am so glad to see your reply..have been thinking about you & your ulcer a lot..especially cause a few months ago the a NHS cornea specialist opthalmologist consultant at my annual eye clinic review prescribed the newly NICE-approved immunosuppressant ciclosporin ikervis drops daily added to my usual dry eye prescription drops & gel etc. He prescribed these ciclosporin ikervis drops because my Sjogrens cornea inflammation is continuing to worsen severely despite 3+ years on a first line combined therapy dry eye treatment plan . These ciclosporin ikervis drops are intended to prevent ulcers on the cornea due to Sjogrens filamentary keratopathy. So, I've been wondering: your eye clinic offered you ciclosporin ikervis drops?
Hello Barnclown,
I was discharged from the eye clinic last year because I said I didn't want to have a procedure done where ( I'm having a brain fog) they would put something in my eye to produce tears but if it didn't work I could have weeping eyes 👀 constantly or they could fall out.
I said I would think about it because he wanted to do it there and then. When I went back I said no because there was no guarantee it would work and if it didn't it couldn't be taken out (I think it was called a plug).
The next time I go to my Opthamologist I will enquire about the Ciclosporin also my Rheumathologist.
All the best xx
👍🙏💐
I think you are talking about punctal plugs Maureen. There is some good information about them here allaboutvision.com/conditio... although it is an American website. I've not had it done myself but there may be someone who has it done who can tell you more about it. I was given to understand that they could be removable though which would allow you to see if they would be successful or not. (This information seems quite interesting although it seems aimed at those who actually put the plugs in!) barnardlevit.co.uk/our-serv...
Yes it was called a plug but the doctor said it could not be removed. My husband was with me and I've just asked him to confirm and he said I heard correctly.
Hmm - maybe you need to ask for another opinion - can you see another opthalmologist at the eye clinic perhaps? I've just checked the information about punctal plugs on the BSSA website and they definitely say they can be removed if necessary:
Complications
Punctal plugs are usually well tolerated and serious
complications are rare. Watery eyes may be experienced by
some individuals. Punctal (not intracanalicular) plugs may
extrude and require re-insertion. Some people experience
foreign body sensation in relation to the position of the cap.
Again intracanalicular plugs tend not to be associated with
this problem. Rare complications described in the ophthalmic
literature include infections, allergy and displacement of the
plugs.
12-17
If necessary, punctal plugs can be removed with
forceps whereas intracanalicular plugs can be flushed down the
nose with lacrimal irrigation.
Hope this helps!
Thanks, yes this information helps.
The British Society of Rheumatologist care guidelines for Sjogrens says this about punctual plugs:
"There is evidence supporting the early use of punctal plugs which improve symptoms of dry eye significantly more than artificial tears alone.
First line treatment should be with ‘visible’ plugs. If this successfully improves symptoms or signs, and there is no evidence of excess watering or over flow of tears, then permanent punctal occlusion can be achieved with punctal cautery. Intracanalicular plugs are effective but increase the risk of granuloma and infection and are not visible on examination . Referral to an ophthalmologist is advised and it is important to remember that plugs are available in different sizes and the puncta should ideally be measured with a calliper prior to selection and insertion of an appropriately sized plug. Improperly sized plugs may fall out, with accompanying deterioration in symptoms; alternatively loose plugs will allow tear flow, or cause irritation."
The Opthalmology consultant said I have a particular stage of cornea inflammation (Absent tear meniscus, filamentary keratitis, markedly reduced tear film break up time, chronic ocular surface inflammation) that despite 3 years on first line treatments (standard prescrip drops & gels & meibomian gland treatments) isn't damping down. NICE has approved these ciclosporin ikervis drops specifically as the second line treatment for this. As I understand it, the plugs are not for my particular problem (I have no tear meniscus whatsoever)
Take care...hoping to learn how things go for you
🍀😘🍀😘🍀😘
I have it ,too.
I have had Sjogrens for years, since long before I was diagnosed with Mixed Connective Tissue Disease, which is related to Lupus. I didn't know I had it, It has destroyed my teeth by lack of saliva and damages oral tissues through dryness and ulcers. I have only recently been informed that Sjogrens is the culprit for Chronic Fatigue which is very distressing and drags one down. Rheumatologist told me that the fatigue is the most difficult part to treat of the whole illness. Not good news as its also unpredictable where plans often have to be postponed, it can be crippling. Just thought I would point this out for anyone that's not aware of this finding.
Yes the fatigue is the worst symptom for me too - sometimes I just have to lie down and sleep wherever I find myself - once even on a beach in the rain! Someone on a different forum was saying they have Sjogrens and ME and didn't realise that the ME is actually part of the Sjogrens. I seem to even be getting fatigue of the arms now too so they have to have regular tests even when my brain is rearing to go!
Hi all, was just wondering because Sjogerns is such a hot topic at the moment - can anyone recomend me a good rheumatologist? I live in essex, london. I can travel its just the one i have "specilase" in sjogerns but i dont find him at all helpful. Thanks 👍
I'm in cambridge. One of the rheumys there told me Guys Hosptial in london is doing cutting edge work with Sjogrens patients. Have you asked the BSSA helpline? It's great! You don't need to be a member:
helplines.org/helplines/the...
🍀🍀🍀🍀 coco
I believe Dr Elizabeth Price in Reading is supposed to be very good and is one of the main medical advisors for the BSSA.
Dr Price is my consultant and she works out of the GWH in Swindon . She is very good and I would definitely recommend her to others .
Oops sorry Swindon not Reading! Mind you it all looks the same from the far north of Scotland where I am!
Out of interest does Dr Price offer you treatment options that aren't just symptomatic ones e.g. Pregabalin?
Not sure exactly what you mean but she does 'think out of the box' with treatment options so she has been putting in a nerve block into the back of my head for my occipital neuralgia and has prescribed carbocisteine for thick salty mucus problems . She did suggest gabapentin to me for the neuralgia but i turned that down as I need clarity of thought! Is that the kind of thing you mean?
I suppose I meant treatments that tackle neuropathy at source rather than sticking plaster medications (with potentially foul side effects!) such as Gaberpentin? Having been previously misdiagnosed and treated for RA, I'm concerned that RA and Lupus seem to be taken more seriously in terms of big gun drug criteria than Sjogrens. I'm thinking of Rituximab and IViG or mycophenolate. I know I'm terribly drug averse anyway so may not need these myself - but there doesn't seem to be nearly as much choice for primary Sjogrens sufferers as there is for other CTDs?
I've been reading the blurb on Small Fibre Neuropathy and it says that the most important thing is to find the cause and tackle it ASAP i.e if it's Pernicious Anaemia give B12 injections or if its Diabetes then treat this disease before the neuropathy causes any permanent damage. I am told that I have plenty of irreversible damage already and yet there's nothing that will help apart from Pregabalin - which I don't want to try for similar reasons to yours re Gabapentin. And yet the vast majority of primary Sjogrens sufferers only qualify for Hydroxichloraquine? And I'm quite certain that immunosuppressants did slow down the progress of my SFN because it is part of an inflammatory process.
I'm not sure that there are any 'big hitter' meds such as the biologics currently licensed for Sjogrens in the UK. I know I was approached to do the Tractiss rituximab trial for Sjogrens but I chickened out and as I understand it, the trial was not particularly encouraging in its outcomes mdedge.com/rheumatologynews... Other biologics are currently being investigated as mentioned in this piece.
Oh thanks I'll read this. I wouldn't want to take Rituximab unless I was strongly advised to or had Sjogren's related Lymphoma. But I don't want to carry on getting weaker and number and increasingly stiff and achy - or be dizzy with vertigo all the time - either so I'd like to have the choice - especially about IViG. In the States Rituximab is licenced for severe cases of Sjogren's I believe, as is IViG.
I'm with you there on taking meds unnecessarily That was my exact reason for not taking part in the trial: I want to leave things for using just in case the situation worsens (keeping everything crossed it doesn't of course). I really don't think the medical professionals have got a handle on the neuropathic complications caused by Sjogrens and how this disease generally affects our whole body. I think you are a similar age to me (I've just turned 50 this year) and the whole emphasis that I see is that it is a disease seen amongst older women (even older than we are ) and causes problems primarily with dry eye and mouth and maybe fatigue thrown in. Even Dr Price has a tendency to dismiss some of the symptoms I present with as unrelated to Sjogrens (such as my shoulder and rib pain). I am due to attend a BSSA meeting this Thursday where she will give a summary of what happened at the annual conference a few weeks ago.
Oh that will be interesting do pm or post to let me know how it goes. I meet a Scottish group in Edinburgh for the first time on Saturdayweek - arthritis care person the guest speaker taking about arthritis. I'm 53 and we'll post menopausal but I think you are right -it's the age and gender issue that influences the health service and research etc. The emphasis is on people in their middle years of working age because society needs to help them remain in work rather than on benefits.
HoweverI'm pretty sure that I've had Sjogrens from when I was a child. And from everything I've gatheredSo have many others so I think this businessof it mainly affecting older women is a myth!!
And the whole neuro thing is really moving fast in John Hopkins and Jeffersonso the BSSA need to work hard to keep up I feel! Of course your rib and shoulderpain is sjogrens related. And I notice the Rituximab trial you linked is focussing on addressing fatigue and oral dryness rather than on the more serious aspects includingRA like joint pain, neuropathy and preventing organ damage.
It still seems to me that a diagnosis of Sjogrens isn't that much more helpful to sufferers than a diagnosis of ME or Fibro. X
Ps a really interesting read thanks. And it makes me feel hopeful that at least the research is being undertaken and perhaps they might find a new drug that targets our T-cells and makes a big difference. I have to say that Methotrexate really helped with my neuropathy, fatigue levels and my RA-type pain.
I would love to trial the vagus nerve stimulator most though.
I think the VN stimulator is a long way off, many years. I am still struggling to fight to get onto the clinical trial and I have a condition that it has been shown effective for.
I think that those who have serious drug intolerances/ allergies or are at increased risk of cancer from immunesuppressants might be some of the best candidates for VNS trials and this absolutely should include those with primary Sjogrens. After all, unlike other CT diseases, no one is able to offer us anything to prevent damage to our organs or nervous systems. There is no systemic treatment that will prevent people's mouths from rotting or eyes from getting corneal ulcers if that's the way the sjogrens plays out.
If it's already been shown to be useful for those with MS, Parkinson's and epilepsy then they should perhaps extend the trials right across the U.K now and include those with pSjogrens as well.
As I've said to you before, it's not a competition between individuals with awful diseases - but about creating a level playing field which could prioritise those who cannot take drugs. I say this because,when I first heard a programme about it a few years ago now, the Dutch trials focussed on those epileptics who were unable tolerate anti-seizure drugs - with very promising results i.e. seizures stopped or were greatly reduced.
Sorry TT but I think you've totally misunderstood me. I'm simply saying that I don't think the stimulator trials are in the near future. It's a shame really. My consultant said that because the evidence is weak and the cost is high, we are not close. That's all I was saying.
Oh okay - I thought you were saying that some conditions were more suitable than others for trials - sorry if I misunderstood.
It sounded so promising for those with epilespy on that radio programme. I also worry that Big Pharma might be influencing the funding somehow?
Oh well I'll just have to keep up with singing along to my iTunes playlist to stimulate my own vagus nerve - and keep my larynx and brain exercised trying to remember the lyrics!
No no, not at all.
My consultant is the one leading the GI trials and he told me the other other U.K. based ones are for migraines and other headaches, as well as epilepsy. Actually, I can't recall if he said epilepsy was trialled with this particular device. It's a non invasive device called gamma core. You hold it against your neck. Obviously, this is much safer and probably (?) cheaper than the surgically implanted gastric pacemakers. So from his perspective, I think he was pushing it at his patient group. Although he did say it was expensive and you have to jump through many hoops to even get this "cheaper" treatment. That said, I think the results were promising, especially given the side effects profile of the medications that are prescribed.
After that programme a few months ago (no recollection of the name but something to do with RA and an implanted device), NRAS said they felt this was a long way off. I was initially in disagreement because it's clearly here but since I've spoken to my consultant again, it's still in the early clinical trials stages. 🙁 I didn't realise how much work it takes to push through a drug/treatment.
That's interesting to know Crashdoll thanks. It does seem an awful shame that it is taking so long to get off the ground and its efficacy is being questioned - when there are so many fewer risks to a device of this type than there are with most drugs. If a person can't take drugs at all then what's to lose? I still can't help being suspicious that health economics and politics might be standing in the way of something potentially life changing for all those of us with chronic conditions. I'm not a conspiracy theorist by nature but I am cynical!
Primary SLE with sjogrens, although most of my symptoms now relate to sjogrens.
Diagnosed a few months ago with Sjogrens and with Multi Def about a year ago. Main problem I find is with extreme fatigue, constant dry eyes and joint pain.
Can I just ask, does anyone else with Sjogrens have trouble with the gut I.e. feeling full before finishing a meal with a feeling of indigestion? My ENT doctor took a look down my throat and said I had reflux, he gave me a bottle of Gaviscon Advance, helps a bit not much.
Hi there JanW
A lot of us with Sjogrens have various problems with our digestive systems. The dryness causes problems throughout the body due to lack of secretions - it's not just about eyes and mouth! There are also problems sometimes due to the autonomic nervous system not working properly - this can cause issues with peristalsis for example i.e. the way food is pushed through the system from 'top to tail'! Of course there is also the dreaded inflammation just to add to the situation. In my own case I have had issues with LPR - silent reflux - which caused me a lot of issues with my throat last year. The treatment for this was to be put on PPI (proton pump inhibitor) meds e.g. omeprazole until things had settled down. It can also help to raise the top end of your bed or use a reflux wedge which raises your body up from the waist to help prevent the acid from rising up so much. I also have IBS-C problems and abdominal pain and have been recommended to use pilocarpine to increase secretions throughout the body (as well as other meds to help my IBS namely mebeverine, fibogel and escitalopram). It can be difficult to get some doctors to understand the extent to which Sjogrens affects many different systems in our body unfortunately.
Thanks for that Sjogi, it's been a worry. I saw the doctor and he checked tummy and said all fine he was looking for a lump which would have been a bad sign. I still have problems eating a full meal and was wondering if it was Sjogrens, so you've put my mind at ease. I've got omeprazole tablets left from last time I had a problem so will use what I've got left.
Have Lupus and was diagnosed with an overlap disease of Sjogren’s. seem to collect autoimmune diseases have 3 now hoping no more.
I could not stand more than 3-5 hours at work due to severe pain in both feet as result of plantar fasciitis. After receiving proper treatments and wearing the orthofeet shoes I can happily say that I am able to stand for 12 hours at work and be pain free in both my feet. They feel great and I love the colors. Have helped my knee pain tremendously.
Does anyone else have Shrinking Lung Syndrome as a complication of their SLE Lupus
lupus "like" syndrome - and many other auto immune diseases. New symptoms what is this?
Sicca/Sjogrens
