Hi, I posted here some time ago saying I was under investigation for primary Sjogren's. Although I have the classic signs of no tears (I do have eyelid tears but with a low reservoir), parotid glands swell and dry mouth (with broken teeth), they have decided that because all of my tests were negative (bloods and ultrasound), I do not have Sjogren's. A sicca condition instead. Of course, I hope they are right.
Anyone have any suggestions please? Is it worth trying some type of massage technique for example to get lacrimal glands working again?
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Bluedragon
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Thank you very much for that link - an interesting read, I hadn’t read it before. Fatigue I didn’t mention- but yes- a severe lack of energy. I have Hashimotos and B12d.
The initial consultant didn’t know how to do the Litmus test - he was googling it when I walked in! He kept putting it in, taking it out, not left in continuously- said oh it’s virtually dry. Then measured it several minutes later - duh- litmus paper - osmosis....obviously I told main consultant this but was ignored.
I often get woken up with hiccups, very odd, hadn’t considered this a sx. I manage my digestive system with herbal bitters. Still need to work on other dry parts of body!
30% of people with Sjögren’s have negative bloods. It then can only be formally diagnosed by lip biopsy if it’s primary ie your first rheumatic disease. Otherwise it can be diagnosed as secondary to another but not treated as a full blown rheumatic disease. Having Hashimoto’s and B12 deficiency are pointers to other autoimminity but not diagnostic of Sjögren’s of themselves.
The blotting paper test is regarded as redundant in the world of ophthalmology thankfully. Other conditions can show up with dry eyes and genuine Sjögren’s sufferers can occasionally not have very dry eyes.
The blotting paper/ Schirmers can give false readings and is certainly not diagnostic one way of the other. The only way to test for dry eyes (and Sjögren’s usually causes 3 types of dry eye disease - low mucin, poor tear break up and meibomiam gland disease) is to be tested by a high street optician, preferably having not used drops or ointment immediately beforehand. If they confirm your eyes are unusually dry then get them to write this to your GP and copy you in.
Sjögren’s is a systemic disease so you would usually have other symptoms and signs as well as dryness eg bilateral joint pain, severe fatigue, neuropathy eg pins and needles/ burning, IBS-type symptoms, reflux, be unable to swallow food without water etc.
If you have these then your rheumatologist isn’t aware enough and you need a second opinion based on optician’s report, raised inflammatory markers and positive lip biopsy if you can face it. This is how primary Sjögren’s is diagnosed when bloods are negative. But I’m about to post an update so you may want to read this before deciding whether to push on for formal diagnosis or not. 😏
Thanks TT, yes - of course Schirmers not litmus - argh!
A good idea re optician writing to Doctors, I hadn't thought of that.
The first consultant advised lip biopsy - went on waiting list but three months later and different consultant advised against it, giving horror stories of numbness etc, so biopsy cancelled.
All inflammatory markers are raised - C-rP, ESR and ferritin. No notice is taken. I can take the fatigue, painful feet, constipation (when not on herbs) and the need for water to eat/wake up in night needing a drink. I can't take bilateral pains - instead I get random bursts of intense pain for about 10 seconds, can be most places.
I hadn't heard of the three different types of eye disease, I shall research thank you.
Yes but not everyone knows about high fodmaps and IBS AC so it’s a good idea not to recommend medications which can only be bought online for this reason. I’m sure people would say the same on the NRAS HU if I recommended over the counter nsaid meds to others without knowing enough about your RA.
Okay well I was just mentioning this as a potential risk as I always do when people suggest XyliMelt here. I didn’t actually say you were recommending it in my first comment - just setting it in context of Sjögren’s and Lupus as this is a community for Lupus and CTD sufferers, many of whom also have IBS or even IBD.
Even if you don't have Sjogrens as long as you have many of the symptoms why not treat those symptoms with the same treatment as if you had Sjogrens, ie. the eye drops (Systane is a good otc product) and a salivary spray, for starters.
I agree that Bluedragon’s sicca symptoms need treating topically - that is a given. But if it is Sjögren’s then it’s a systemic disease so it needs treating systemically. Similarly to the butterfly rash of Lupus - the dry eyes and mouth are just the outer manifestations of a full blown disease.
And if it’s not Sjögren’s then the cause of Bluedragon’s pain still needs to be established and treated.
I have Sjogrens alongside scleroderma, PBC and hypothyroidism. On ultrasound they tell me that my saliva glands are typical of Sjogrens as they are very patchy. I also have Sjogrens tongue, which is fissured and cracked and I'm not able to eat certain foods. I'm Anti Ro pos, anti centromere pos, gastric parietal antibody pos, AMA pos, Img posAnti sm pos. phew.
If you did have Sjogrens affecting your mouth, then they would find patchy saliva glands.
Hi, thanks for that, I'm negative for all - apart from the thyroid anti bodies (but I don't recognise the centromere one tbh). The ultrasound showed some thinning I think it was but this was disregarded by the consultant.
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