I had an unexpected rheumatologist appt today (long story). Anyway I saw a different guy - the clinical lead. I was hopeful n left feeling quite positive but on reflection I'm not so sure ...
He didn't have my full notes but reviewed bloods and said he THINKS I have sjogrens. He's not sure coz I've not had saliva biopsy yet - apparently that's the clincher. I've not been tested for dry eyes (and haven't got serious symptoms - I can wear hard contact lenses for 18 hours quite comfortably) and both my GP and gynae assure me that's not dry either!
I DO NOT have the usual stuff for sjrogrens but do have almost all lupus symptoms and I get more and more each week. When I pushed a bit he decided I have unspecified connective tissue disorder which may lean towards lupus.
I've had some kind of injection to dampen my immune response and if no improvement I can start hydroxychloroquine which is probably what I'd get for lupus anyway. I got him to agree my GP can request it so I don't need to wait two more months until I see him again
I was so pleased (ironic I know nobody wants a sjogrens or lupus diagnosis) it felt like I was getting somewhere particularly as this injection might make me feel better in just two weeks.
Unfortunately I took a trip to see Dr Google and no matter how much I read about sjrogrens it doesn't make sense. My GP has also been adamant it's lupus not sjogrens
Does anybody have any thoughts or insight please?
My GP is on hols for a fortnight I could go to the other GP who is also great but isn't as involved. They said they would refer me elsewhere if my next rheumy appt was as "great" as the first. I'm tempted to ask them to do it rather than wait to see endochrinologist (adrenal gland and thyroid issues) and then refer.
Does this sound familiar and as though it's along the right lines?
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Polly2Cats
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It doesn't have to be Sjogrens, it could be sicca syndrome which is dryness symptoms without antibodies forming. But I agree - if you can wear hard lenses that long without problems it can't be very bad can it!
If it were me I'd go and discuss it with your GPs - who sound a lot more "on the ball" than that rheumy and it is really important that you have confidence in the specialist. That one, consultant or not, sounds really a bit um, can't find the word I want in English...
Thanks PMRPro. I bet that word you are looking for rhymes with Cupid? Or maybe it just has 4 letters? I think GP is good option. I've not heard of sicca so I'll look it up.
BTW thanks again for the links you sent me last week I've shared the "spoons" analogy with a few folk and it's really helped their insight into what I'm going through. I now refer to my activity tokens. My niece suggested I should call them jewels (apparently energy is measured in jules)
Great discussion polly...I've come a bit late...glad I didn't miss this. Not much for me to add, except maybe this will appeal to you:
My prof head of lupus clinic called my sero neg sjogrens 'sicca symptoms' for a few years. Now in clinc it's just called sero neg sjogrens. And at first my SLE diagnosis was called "provisional" but now it's just called sero neg SLE. I've been at lupus clinic for 5 years now...during that time all my immune dysfunction clinicians have gained enough confidence in these sero neg diagnoses...they figure I've been sero pos at times over the decades of what we now know is infant onset lupus. Other consistent elements in my blood results are supporting my clinician's current diagnoses. But I remain an open minded patient: I don't much care what label they put on my multisystem immune dysfunction & connective tissue stuff, so long as my treatment plans help as much as they currently do. Although, for sure, the labels did matter more to me 5 years ago at the start of my diagnostic & treatment process
Also, do you know Wallaces 2 GRRREAT books:
The Sjogrens Book
The Lupus Book
Reading these 2 books over the years, I've been struck by the BIG overlap between these 2 conditions...especially, I feel, between patients like me who have ehlers danlos hypermobility
More good stuff thanks Coco. I'll get hold of those books sure they'll be a great resource.
The luxury of a specialist clinic ... That doesn't happen here we get seen by generalists.
I spoke to my boss yesterday (important NHS lady) who confirmed for me I should go elsewhere and see lupus specialist. I have a weird kind of misplaced loyalty to our local services.
The label itself isn't important in many ways ... I don't care what I've got, treating it is important. That said ... If I'm not going to be dismissed in August after 17 years NHS service with no access to ill health pension I (or should I say the NHS as my employer) need a label.
Like you my symptoms have come and gone (particularly kidney) but this guy was only interested in the "today picture". This showed sjogrens so he ignored the rest
Having reflected over the last few days I'm going to see my lovely GP after her hols and get a referral to specialist clinic in motion.
I can totally relate to what you're saying. Labels really did matter a lot more to me 5 years ago at the outset of my immune dysfunction diagnosis & treatment process....without even a fairly credible provisional diagnosis, the state of limbo is terrible
Immune dysfunction is only partially about the Today Picture. That guy is not a True Detective consultant!
I like your plan...please keep us posted
Yesterday I had my urgent gyn appt...got immediate urgent referral to our top regional gyn cancer consultant. How long can they keep adding urgent upon urgent appts? Well, as far as I'm concerned, it ain't the big C till the fat lady sings. Am just so relieved to be taken seriouslly. Meanwhile, the flying stoat is fit & feisty...bold as ever...here to stay...just waiting to find him actually in the barn when we leave doors open in summer
Ive just been musing about this. See my reply to Leona467 above, or below. Hope it helps a bit. Guru PMRpro is always on the money re. excellent knowledge..
exactly same case like me , doctors confused between lupus and Sjogren but honestly speacking both of them same treatment so PLEASE do not waste time in trying to find an accurate diagnosis , start treatment immediately regarding lupus which is more dangerous and do not waste time loosing health just to find a name of disease !
because it was the problem that happened to be for 7 sucessive years so i've lost a lot of organs just waiting for an accurate diagnosis is it lupus , Sjogren or mixed CT disease or an overlap between .... and finally an honest dr told me that all are same ttt !!!
I agree with others here - I really wouldn't get too hung up on which one as treatments are much the same.
They will diagnose you with a connective tissue disease or a mixture of them, on the strength of your autoantibodies, full blood count and inflammation markers and other signs such as rashes and joint swelling - but probably won't focus too much on specific symptoms because these can develop or change over time. And there is so much overlap as others here have said. I hope the steroid injection helps and you are able to start Hydroxichloraquine soon as this should make a big difference - whichever CTD you have.
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