Implications of positive if ‘weak ANA test’?

[Morganalefaye]

I have dry-eye confirmed by Moorfield’s. I also have dry mouth and my dentist said she suspected I had Sjorgren’s. When tested I proved to have a ‘weak positive ANA test’. What, if anything does that mean?

[Tiggywoos]

did you have any other anti bodies tests done ? Sorry that’s terrible English!

[Morganalefaye in reply to Tiggywoos]

I’m complicated! 😆 Diagnosed Crohn’s (1971) - two bowel resections due to obstruction 1972 & 2015. Osteoporosis - c2000. Iritis - 2000, Osteoarthritis - 2012, Double hip replacements 2015 & 2016, Degenerative Disc Disease 2017, Scoliosis 2017, first rheumatologist diagnosed Psoriatic Arthritis & CPDD, second rheumatologist couldn’t find any active signs of either but diagnosed CRPS and an incipient Cauda Equina. Cataract replacement 2023. I believe there’s more but I can’t always remember it all! 🙄😆

I have so many tests regularly that I just can’t keep up with ‘em all.

[Tiggywoos in reply to Morganalefaye]

hey sisters on the 2 bowel resections !🙄. Complicated makes you very interesting for sure! I think there is a specific antibody for sjogrens but from memory only about 50% of patients test positive for it. I had lip biopsy which was negative but consultant said that doesn't mean you don't have sjogrens. Tests are a nightmare!!!

[Morganalefaye in reply to Tiggywoos]

This is why I wondered what a ‘weak ANA response’ sans any other negative tests might imply.

NB Although my dentist did say she believed I may have Sjorgren’s, and not solely based on my dry mouth, but also on other factors she’d observed in other patients, it wasn’t my dentist who confirmed I had dry-eye, it was Moorfield’s Hospital, and I think they know what they’re doing!

This is the report which mentioned the ‘weak ANA response,

[StriatedCaracara]

Found this link today on Anti Nuclear Antibody (ANA) test. There are usually specific antibody tests done at the same time. This pages discusses some of these too that help diagnose specific systemic autoimmune conditions:

mylupusteam.com/resources/c...

Hope it helps a bit.

[OldTed60]

Have you other more systemic symptoms than just dry eyes? Both Sjögren’s and systemic sclerosis can start with Raynaud’s and sicca syndrome (dry eyes and mouth) but usually there are other symptoms too as they progress eg painful joints, swollen hands, reflux and fatigue. If you have Sjögren’s you’d need to have positive autoantibodies (more specific than ANA) or a lip biopsy for formal diagnosis. Either Moorfield or your GP would have to refer you to a rheumatologist for further tests and diagnosis.

[Morganalefaye in reply to OldTed60]

I have terribly cold feet, fingers and nose. (I loathe the winter). They go quite blue, but never that distinctive white one sees in pictures. I have osteoporosis but I’ve had several really bad falls, yet never broken a bone. Rheumatologist says I’ve just been lucky. My left foot feels like a ‘hoof’ which is why the Rheumatologist says I have Complex Regional Pain Syndrome as a result of the first hip replacement. I suspect this is all something to do with collagen. It’s almost as though I have mild symptoms of several autoimmune disorders but in real terms only the Crohn’s and Iritis have ever become very serious/obvious.

[OldTed60 in reply to Morganalefaye]

Hmm reading your list again I wonder if you’ve ever been described as double jointed/ hypermobile? I have severe degenerative discs and scoliosis and was told last year, age 60, that I’m hypermobile. I have to say this came as no surprise because I’ve wondered for years if I might have a form of Ehlers Danlos Syndrome. But the scleroderma prof recognised this as reason that I don’t have the obvious skin tightening of scleroderma but also, due age and systemic sclerosis, I don’t meet the full Beighton scoring system either. My skin has always been very stretchy and EDS explains so much.

HSD / EDS is umbrella term for a collagen vascular disorder and scoliosis and extra MSK pain are hallmark symptoms.

The rest, including IBD and psoriasis, Raynaud’s, osteoporosis and osteoarthritis - even sicca syndrome - are all common bedfellows as a constellation so I’m not quite sure why your rheumatologist describes this as complicated diagnostically or treatment-wise? Perhaps hypermobility is what they are missing as this has certainly been missed for me until now. And HSD/ EDS really complicates everything including wound healing, pain, mobility and allergies/ mast cells activation. Could this be key for you as well perhaps?

Scleroderma is rare and primary Sjogrens is also rare which makes them harder to diagnose and treat. But there are plenty of treatments for Crohn’s, psoriasis/ PsA etc so maybe best to focus on these I would think because systemic treatments for Sjögren’s and systemic sclerosis are few and far between. X

[Morganalefaye in reply to OldTed60]

I suspected years ago that I was hypermobile but I don’t meet the criteria. I wouldn’t be surprised to discover hypermobility is something to do with collagen either. I get fed up with thinking about it even though pain constantly reminds me! I keep hoping someone will say, ‘Aha I know what that is, but I find that once you’ve been diagnosed with Crohn’s every road leads back to Crohn’s. Various types of arthritis = well known side effect of Crohn’s, tick! Osteoporosis = woman with Crohn’s, years of malabsorption of vitamins and minerals - tick. . Iritis = Crohn’s - tick. Ah, well, onwards and upwards? At 76 I’m lucky in many ways.

[OldTed60 in reply to Morganalefaye]

EDS criteria are only for young people and those with this as their only problem - mostly hypermobile joints I’m learning.

I wouldn’t worry too much about everything being blamed on Crohn’s as long as it was correctly diagnosed all those years back. Unlike Sjögren’s and Scleroderma it’s not that hard to diagnose. I was incorrectly diagnosed with Rheumatoid Arthritis many moons ago but it didn’t actually harm me because the drugs I was given for RA worked quite well for Sjögren’s, Lupus etc as well.

Scleroderma has devastated my innards/ GI. I have severe dysmotility/ paralysed gut from mouth to tail. I sometimes chat or listen to Crohn’s and UC patients when they are getting infusions at same time as me. I’m the one on a fortified liquid diet, running with my drip stand to the toilet in a panic due to bowel incontinence. But it’s taken years to diagnose and treat. There’s much overlap symptomatically for many of us. Got colorectal nurse phoning for 6 monthly review tomorrow morning and none of them have a clue about scleroderma - their stalling on illeostomy is now based in the fact that I’m hypermobile - which is nuts when you think that I’ve been this way all of my life! Previously it was immunesuppression which is fair enough I guess.

I think I’ll be amazed if I make 66 let alone 76. But with the worsening degenerative discs and other MSK and scleroderma bowel incontinence issues I’m thinking I’d really not want to live this way for too long. Sorry voice of doom but just had my third 💩“accident” of the week where couldn’t quite make it to the bathroom in time and I’ve only just finished mopping up! 🤦🏼‍♀️

[Morganalefaye in reply to OldTed60]

I’ve had two resections and have colonoscopies regulary, (although after the last one I don’t think I can tolerate another one). No doubt about my Crohn’s diagnosis.

Is resistance to fractures a feature of hypermobility? Strangely, despite my hip-replacements, multiple spinal issues, etc, I can still easily touch the floor, and stand on one leg for extended periods!

I think the older you get the less resilient you become to pain. There's always lots of joy in life. Simple things like a good book, a friend, the garden, whatever you love. It is easy to get discouraged with continence issues. I have new strictures now, only eight years after my last resection, so I’m hoping they don’t get too much worse before something else carries me off. . The previous span was nearly fifty years.

I nursed for a while and my eldest girl is an SRN, so I’m used to cleaning up accidents - my own and others. No shame in that my friend.

[OldTed60 in reply to Morganalefaye]

Aww thanks. Yes I think younger Crohn’s patients fare much better than older ones because there are so many effective treatments now such as Infliximab and other biologics.

I’ve fortunately only needed two colonoscopies to date but both were hellish so I can understand why you won’t or can’t have more. In my case it’s all in the muscles and nerves so nothing much to be seen in last one 2016. The colorectal surgeon told me that there’s no point in resectioning in my case because any emergency (they ignored me for too long so I ended up almost dying of a perforated bowel) would likely be due to fibrotic and vasculitic changes in my small bowel from excess collagen. Equally I may not heal well due to the hypermoble thingy so may get massive hernias around the site.

My scleroderma is early stage and still evolving and I’m on Mycophenolate so very scared of medical emergencies as I’ve already had two lots of post surgical sepsis over the past 9 years. So I have asked for elective illeostomy but the colorectal MDT keeps procrastinating and so I’m stuck with being homebound a lot more than I’d like. I’m not ashamed as it’s outwith my control. Just fed up with all the extra cleaning and washing entailed and lack of freedom to leave the house!

But yes ageing with chronic conditions isn’t for the faint hearted is it. In my case the Gastroparesis means I can no enjoy social or comfort eating and this seems to cause issues with others of my age for some reason. Maybe it’s the extreme unintended weightloss I’ve suffered since the pandemic or the fact that people seem to me now to eat sooo much that they find hard?

I think the longer we’ve enjoyed sensory pleasures the harder it is to lose them. E.g an old friend was telling me that his stepdad has just lost his eyesight in his only good eye and is in a terrible state and can’t cope with caring for my friend’s mum who has early onset dementia. My friend said that he’s arranged lots of counselling and brail lessons and RNIB support but still his stepdad is foul tempered and depressed. I pointed out that it must be extremely hard to come to terms with for both but especially the man of 70, who has been a professional wildlife photographer all his working life. It will take more than a few months to adapt to mentally and physically. I think I feel same way about food and toileting! Maybe it’s the same with pain - the newer it is the less we can cope with it?

It sounds to me, with scoliosis and touching your toes etc, as if you do indeed have hypermobile spectrum disorder. I don’t know if it makes the chance of breakages less but to me it seems that having very stretchy skin and connective tissue might mean we land differently and less abrasively or abruptly perhaps? If we have always hyperextended then it seems more likely to me that we might be less prone to fractures - but maybe I’m just trying to see the up sides🤷🏼‍♀️😃?! X

[OldTed60 in reply to Morganalefaye]

Ps forgot to say I have osteopenia/ borderline osteoporosis but also fallen and not suffered fractures (barring ribs - which have healed eventually). I’m now crediting the hypermobile spectrum disorder!

[StriatedCaracara]

Now diagnosed UCTD (ENA testing negative for Sjogrens), my dry mouth and eyes started after covid infection March 2020 (early in pandemic). I think for me autonomic dysfunction is in part, causing these dryness symptoms, as secretion can be affected. On the page below if scroll down there is a diagram:

thedysautonomiaproject.org/...

(Connections have been made with covid. People afterwards reporting some of these symptoms.)

It may apply to some others so sharing.

Also, though my eye dryness is caused by M...bian Gland Dysfunction (MGD). Forgotten spelling..

[Morganalefaye in reply to StriatedCaracara]

Looks interesting! Thank you. I haven’t had Covid and my problems all began many years ago when I was first diagnosed with Crohn’s. They got worse when I had iritis.