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[Erniedoll]

I had Sjogren's antibodies and slightly positive SCL 70 two years ago. Other than photosensitivity and leg pain, I didn't have any other symptoms. In March of this year I got covid and suddenly my ANA went from 1:80 to 1: 640 and my SCL70 was now more than 8. I now have fatigue muscle aches, Raynauds . Some doctors say it is part of long term Covid, others say it is Sjogrens and possibly Scleroderma. Any one else's dormant autoimmune disorders getting activated from Covid. Be safe all.

[Castella]

Thanks, that's a very interesting observation.

[MissusTee]

ANA is a non specific umbrella autoimmune blood test, do you know what the actual antibodies are that you have?

[Hidden in reply to MissusTee]

Erniedoll has already said in the post - anti Ro/ La and Scl 70

[MissusTee in reply to Hidden]

Ok.........but she didn’t mention anti ro, which is why I asked - if that’s ok with you?

[Hidden in reply to MissusTee]

Yes sorry - I just assumed that you’d know what Sjögren’s antibodies are as there are only two. Apologies if I sounded a bit abrupt.

[MissusTee in reply to Hidden]

I know what they are, I didn’t know if the O?P knew that’s all.

[mythreecats in reply to Hidden]

Just wondering if you know if anti la and ro have to be both present to indicate sjogren's.... Been reading stuff and some studies indicate this.... But its all quite confusing tbh.

I have a positive anti la only

[Hidden in reply to mythreecats]

I don’t think Sjogrens or any of these rheumatic diseases can be diagnosed on antibodies alone. They are just a pieces of the jigsaw. The only definitive test for SS as far as I know is the lip biopsy. But I read on a lupus group that someone with positive lip biopsy and high inflammation plus SS symptoms still couldn’t get a diagnosis despite seeing a rheumatolgist specialising in SS so it seems to be very hard for some to get diagnosed whatever criteria they meet.

[Hidden]

Hi there. Firstly sorry that you’re struggling with worsening symptoms post Covid. I would think these blood test results were fairly significant yes - given your symptoms.

I haven’t had Covid and have shielded since early March. But I did get Swine Flu in 2010 and, already having had a lifetime of eczema and hypothyroidism - had a rapid onset of what was diagnosed at the time as RA with what was assumed to be secondary Sjögren’s and Raynaud’s. In 2015, despite flu jab and pneumovax - I got influenza A followed by pneumonia. This triggered a constant flare of very painful small fibre neuropathy. I spent a month in hospital with pancreatitis and then post op sepsis.

Then I was diagnosed by lip biopsy with Sjögren’s - ANA 1:320 - high immunoglobulins and inflammation but no specific antibodies.

So all my symptoms were then blamed on Sjögren’s by the scleroderma doctor and I was about to be discharged last year. I sought a second opinion and this is when systemic sclerosis was added because a new highly positive antibody had arrived called U3 RNP - which is rare but fairly specific to Scleroderma. My diagnosis for now is Overlap CTD with features of both Sjögren’s and systemic sclerosis. My rheumatolgist isn’t sure which is responsible for my symptoms as there is so much overlap. So you may well have both and they may have been accelerated by Covid I’m afraid.

Personally I think autoimmune diseases are very often triggered or accelerated by viruses and other illnesses so it makes sense that this has happened to you - although I’m very sorry it has.

There’s a new study showing that mortality has significantly increased amongst the rare autoimmune disease population since the pandemic started, They don’t yet know the cause of this increase in deaths but I suspect it’s at least partly because rheumatolgy services are so stretched and many existing or undiagnosed patients have been neglected or ignored. Or too scared to go into hospital and be seen face to face even if this is an option they are given.

I guess the only bonus of having had Covid is that you may be able to get consultations and have better access to designated clinics for people with long Covid perhaps?

rheumatology.org.uk/news-po...

[Erniedoll in reply to Hidden]

Thank you for your reply. Yes, I do think the virus has triggered what might be Sjogrens and Scleroderma. Even though I have the antibodies, I am still asked to get tested before any tests such as the PFT that I need. Be safe all.

[Hidden in reply to Erniedoll]

It must be a worry for you. I completely relate because even with a specific antibody my diagnosis is still viewed as a bit questionable and my Lupus/Sjögren’s rheumatologist tells me she feels a bit out of her depth. I think she would like to call it UCTD or perhaps MCTD and ignore the systemic sclerosis part. Or hand me back to the scleroderma clinic who tried to despatch me back to GP last year. However I could just point out that I meet the full diagnostic criteria for two overlap diseases. And I’ve lost trust now in the scleroderma clinic doctors here. I feel they are trying to save face at my expense.

Hopefully as knowledge improves about these rare rheumatic diseases - doctors will learn more about all the crossovers. X