Very Confused About My ANA Results

[Jadaboo4]

So I’ve been dealing with being sick since last January with fatigue, joint, hand, and feet swelling, brain fog, sensations in my legs and arms and weakness, pain in shoulders, legs, arms and , rash on my face. I’ve been tested so many times and I’m diagnosed with UCTD, Seronegative RA, and fibromyalgia. I’m taking methotrexate, prednisone 10mg a day, plaquenil 400 a day, and savella 100 a day which are not working so far . I recently was tested again with a more sensitive test called Avise. Now prior to this my ESR, CRP, was and still is high and my ANA was always 1:640 Nucleolar with Ro52 positive. When this test came back the results were Ana 1:80 Dense fine speckled, ANA IGG, and Ro52 positive.

Does that mean that something changed? If so what does this mean? Waiting to here back from rheumatologist

[GottaAsk]

Im not a doctor but been at this a few years with my own blood work learning along the way. When on medicine you will see the ANA go down usually. Some people stay same, some move down, some even can go negative. As for the Dense Fine Speckled I have read articles both saying they are most common in healthy individuals while other articles say that isn't actually right. So once again welcome to the world os autoimmunity where no one actually knows what the heck is going on hahah. But I would say in your situation it would be for sure that you are with autoimmunity due to ENA antibodies and other previous diagnosis. So you are probably the same just being treated now, as mentioned im not a doctor.

[Jadaboo4 in reply to GottaAsk]

Hello and thank you for your response! I understand now and it could just very well be the medication because as for my symptoms they are the same and some are worse. I do agree this is just so much. You take care and again thank you 😊

[Babycakes1971]

I don't know if this helps but I've had changes to my ana pattern and different things change or show up at different times during my illness. I also wondered, does this mean the course of my illness is changing or am I developing new autoimmune diseases. I found that my rheumatologist tends to go on my symptoms rather than bloodwork and sometimes it just changes but see what your dr says. Do you feel you have new symptoms or have others died down a bit? Sorry I'm not more help and good luck x

[Jadaboo4 in reply to Babycakes1971]

Hello and thank you so much for your response! As far as my symptoms they definitely are the same and some are worse like the swelling and pain. But of course I will see what she has to say about everything. I really wish it was one answer and one pill to fix everything but I know that would be too easy.I just really want to be normal again. You take care and again thank you so much 😊

[PURPLECROCUS3 in reply to Babycakes1971]

Hi Babycakes1971,i noticed you said your rheumatologist tends to go on your symptoms rather than blood.I was diagnosed with Fibro in 2005 based on my symptoms alone.Lupus was suggested in 1997 but not diagnosed.i have symptoms of Lupus.pagets and acromegaly as agreed by my GP and two other GPs have diagnosed lupus based on my symptomds but the rheumatologists since 2011 have not asked about or addressed my symptoms of these and fobbed me off saying "things don't happen" that have happened to me and refuting what i have been diagnosed with in 1995-98,ie Raynauds and sero negative poly arthritis.i am at my wits end with the negligence by the rheumatologists who in the last three years as well as the bone team refuse to see me even though my symptoms have got progressively worse in the last three years,sorry Jadaboo4 not intruding on your post

[Jadaboo4 in reply to PURPLECROCUS3]

Sorry PurpleCrocUS3 you are going through this and no intrusion at all. Just a suggestion but it might be time to find another rheumatologist especially if your symptoms are worse.

[PURPLECROCUS3 in reply to Jadaboo4]

Hello jadaboo4 I spoke to my Gp yesterday and he has made a referral to rheumaotology in another health trust.am lodging a compalint against the rheumatologists as well as gastro's and bone team who also have not seen me in 3 years and think they have the right not to

[StriatedCaracara in reply to PURPLECROCUS3]

I had to go private - although no insurance family helped.

Local NHS said that I did have autoimmune disease like Lupus or Sjogrens as I walked in the room. This could have only been based on blood tests. There had been no discussion of symptoms. I only had a strong positive ANA.

Second opinion different, and fortunate in choice I made. I was treated immediately on hydroxychloroquine but it has taken nearly 3 years to feel OK. Hydroxychloroquine increased, been twice on steroids. Now also taking Mepacrine and feeling a different person. It is incredible. I'm in remission and some symptoms even from over a decade ago have gone. I'm really fortunate but it has been a journey of learning not to trust some departments.

Research dictates criteria, bloods tests are out of date, so much of the science is still unknown . Some departments chosing to base caseload on criteria intended for research only not diagnosis. Agree situation appalling. Patients understand this, GPs do too, but nothing changes.

Found Dr Donald Thomas' (author of The LupusEncyclopedia) take interesting:

healthunlocked.com/lupusuk/...

[StriatedCaracara in reply to StriatedCaracara]

Another post

healthunlocked.com/lupusuk/...

[Jadaboo4 in reply to StriatedCaracara]

Hi,

Thank you so much for the information! So the last test that I did was the Avise test and those were the results I mentioned in my post that’s why I so confused because they are so different from previous test (the Ana titer and Ana IGG and everything else the same) so it left wondering what is right but most importantly what does this mean in helping me get better because this has completely change my life which I’m sure everyone can relate

[PURPLECROCUS3 in reply to StriatedCaracara]

thanks will take a look

[KayHimm in reply to PURPLECROCUS3]

Purplecrocus3 -

I think it is important to take things in context. Differentiating between lupus and fibromyalgia involves diagnostic blood tests. Even if a person with fibromyalgia feels the same as a lupus patient, there are differences on exam and in blood tests.

And blood and urine tests are still used in the treatment of autoimmune disease. There are no absolutes.

If all of your blood work has been negative and you have no signs of autoimmune disease like swelling in the joints, fever or rash, they likely found you to have fibromyalgia, not autoimmune disease.

It is complicated. I agree Babycakes1971 that symptoms are the most important, especially when compared to changes in ANA and ENA, which don’t usually drive treatment.

Hope that helps.

K

[PURPLECROCUS3 in reply to KayHimm]

my Fibromyalgia was diagnosed in 2005 after 10 years of symptoms based on my symptoms.My GP in 2011 thought my newer symptoms were something else.lupus was suggested in 1997 /two years before i was diagnosed with Raynauds and in 1997 sero negative arthritis.Since 2011 ,I have most of the characteristic symptoms of Lupus as three GPs have agreed and diagnosed -including the butterfly rash on exposure to sun.i have since 2011-bone pain and deformities to my skull,facial features nose cheekbones jaw clavicles sternum ribs degeneration of my hips knees and spine as well as carpal tunnel syndrome agoraphobia and other conditions that are part of Lupus Pagets and Acromegaly and (as my gp confirmed) i have symptoms of all 3 -and symptoms that blood tests and scans dont show.A rheumatologist said Pagets does not show in Xrays for several years (Know this is page is not re pagets disease),and all 3 conditions can be sero negative.Symptoms are important and when these conditions have so many symptoms and asociated conditions and non conclusive bloods then symptoms should not be ignored.i forgot about weight loss -having had 5-6 episodes of sudden unexplained weight loss since 2015

[KayHimm in reply to PURPLECROCUS3]

A dermatologist may be able to help diagnose your rash. Did the rheumatologist not treat your inflammatory arthritis? Hard to make sense of it.

It depends what the GP saw. The rheumatologist should explain why a symptom does or doesn’t fit into a rheumatic disease picture. One example would be abnormal urine. In one patient it is likely lupus nephritis. In another it is a bladder issue and the patient is sent to a urologist.

You would benefit from knowing what symptoms fit. Maybe your skull issues are a lupus symptom. There are so many. But they are not part of lupus classification. A rheumatologist would make that call.

Many common symptoms look like lupus. But most really aren’t. It isn’t that common. Overlap and undifferentiated forms are more common. But autoimmune disease is still not seen frequently like fibromyalgia.

I think a GP may only see a few lupus patients in a life time. Maybe I am wrong about that.

K

[PURPLECROCUS3 in reply to KayHimm]

The Rheumatologist did treat my hips and costochondritis wth steroid injections,but that was all.The GP saw the butterfly rash ,I saw two rheumatologists neither of whom asked about my symptoms and for the second .one to say "weight changes are due to imprecise weighing scales,most people only have pain in one bone,she feels her feet are two sizes bigger,her clavicle appears normal.people don and doff heavy clothing to vary their weight".I know which of the symptoms of Lupus I have -as a GP confirmed i had more than 4 of the characteristic symptoms.My skull issues are Pagets Disease symptoms -pain and deformities to skull facial features, bones and joints and other signs.

a rheuamtologist said " I dont have Raynauds (I do and diagnosed 1995)because my hands felt warm(In consultation in a hot hospital room),Rayna.uds is affected by the cold,same with my "butterfly rash "-caused by exposure to the sun .

my GP said my symptoms were those of Lupus

[KayHimm in reply to PURPLECROCUS3]

À GP can diagnose lupus. In parts of the US where there aren’t many rheumatologists, they treat lupus. So talk to your GP. On the NHS they could only prescribe certain medications, though.

[PURPLECROCUS3 in reply to KayHimm]

I know they can.I don't know what specific meds there are for Lupus but I have meds for different symptoms ie mouth gel for dry mouth.I hope to see my GP the week after next and discuss the issues with the rheumatologists and gastro's who have no clue .

[StriatedCaracara in reply to PURPLECROCUS3]

Hi Purple Crocus 3

Points that help me.

If the same patient is presented to different specialists they can get different diagnoses..does not happen in many disciplines, but seems to happen here.

Patient experience can depend on which part of the world they are in, or part of the country, and what their healthcare provision is like. It is evident it varies considerably.

Fibromyalgia was mentioned to me but the symptoms I did not relate too at any level. Many have both connective tissue disorder like lupus and also Fibromyalgia.

Criteria are disputed, literature reviews prove this and the SLE Classification was designed for research not diagnosis.

If a specialist is experienced and seen many many patients they start to understand things at a different level. They have seen similar patterns including less common symptoms in other patients. They will have also used earlier classification criteria and will know the impact of changing criteria on diagnosis of patients.

[Babycakes1971 in reply to PURPLECROCUS3]

Hi there, yes over the years I have shown positive bloodwork for many different diseases but not had the symptoms. It's scared me as I then assume I will soon. I do think different rheumatologists have different approaches which can be very frustrating. I am now at guys hospital in London where they have an excellent lupus centre and they are much more thorough and forward thinking I think like suggested, you should ask for a referral to someone else. Good luck 🤞

[soul22]

Hi

So if treatment working one would expect results to stabilize then improve

Because treatments your on work at a cellular level reducing bad antibodies is there aim

So good sign if reducing rheumatologist nurse can explain more

If they go higher treatment isn't doing as it should or only new to taking the medication.

Not Dr but from experience that's what learnt

Anti ro is to do with rheumatoid arthritis

[Jadaboo4 in reply to soul22]

Hello,

Thank you for your message! I was thinking that to but then I was saying well why don’t I feel any better yet or maybe they have to keep going down in order for me to start feeling better. But then some levels even though not high enough to flag but have increased like the anti Jo and anti Dsdna. I don’t know all I know is that I just want to feel normal again and be able to go back to work.

[KayHimm in reply to Jadaboo4]

You should ask your rheumatologist about the anti DNA antibodies. I think they are only significant if they are over a certain level. It may not matter if they fluctuate within that normal range. That is important to get clarification on.

[KayHimm in reply to Jadaboo4]

The biggest thing is that you are not feeling better. I suspect that is why your rheumatologist wanted to do the AVISE test to see if they could see changes.

Sometimes they just have to change meds with no corresponding change in bloodwork. I know one person with UCTD who is going on Cellcept after worsening symptoms and lower c3, one with worsening symptoms and no change in labs who is going on DMRD and one with no change in labs but tough to treat pericarditis who is going on a biological.

I hope that gives you some encouragement that your rheumatologist may be willing to increase or change medications to get you to feeling better.

Very important to document quality of life issues and functionality. Be specific so that they know what you are unable to do.

XxK

[Jadaboo4 in reply to KayHimm]

Thank you so much Kayhimm, it’s comforting to know that my doctor is trying to figure it out. Also she did test to see the level of methotrexate in blood and the test just came back this morning and it’s saying that my body is not absorbing it. Now I really can’t wait to see where we will go from here. For the seronegative RA they did an ultrasound on it showed I have synovitis and because of the joint pain and swelling. The Fibro she did a physical exam checking all trigger points and they were tender but the savella should have helped but it didn’t. The brain fog, fatigue, along with high inflammation markers and positive tests, and elevated liver enzymes abnormal urine levels led to UCTD diagnosis

[KayHimm in reply to Jadaboo4]

The swelling in the joints is always a big concern. It is clear from the amount of medication you are on that your rheumatologist is really trying to get the inflammation down. When you hear 10 mg steroids and methotrexate, you know they aren’t kidding around.

Interesting about the methotrexate. Let’s hope that is the problem. Not my area of expertise at all. 😛.

I can help you with all things UCTD, follow up, and diagnostic stuff. I have had it for forty years before I knew I was not the only one in the world.

If you have any photosensitivity, stay out of the sun. Seriously. My rheumatologist was adamant about that. He used to tell not to make him tell me I had lupus. Stay undifferentiated if you can. Progression means nothing good.

Read HSS material on UCTD. It is for patients.

Message me any time.

XxK

[Jadaboo4 in reply to KayHimm]

Thank you so much! You’ve been very helpful and I’m truly grateful because I thought I was losing my mind .

[KayHimm in reply to Jadaboo4]

No, there are many more people like us than full blown lupus or full blown scleroderma. The UCTD syndrome was described about forty years ago by a rheumatologist. We have been studied since then. About twenty percent of patients will progress within five years. There are a few indicators of who is most likely to progress. They keep an eye out regardless.

You will have urinalyses, regulate bloodwork or whatever is needed. The anti DNA and anti SM antibodies correspond to lupus. Also anti-phospholipids. They may keep testing you for those. My doctor did.

Undifferentiated connective tissue disease is about 10 to 1 to lupus, being much more common than lupus.

Terrible name. They are looking into changing the whole diagnosis to “lupus spectrum disorder.” Even now rheumatologists refer to where we are on the lupus spectrum. Someone like you may be described as lupus-like with inflammatory joint disease.

We are all different and there are no rules. I have UCTD and am considered rare because of low level CNS involvement. We aren’t supposed to get that. 😛. But my diagnosis doesn’t change. If I got psychotic from inflammation in the brain they would change my diagnosis. But I don’t want that!

I bet once your rheumatologist gets this methotrexate sorted out, you will feel better.

Hang in there. Remember there are lots of people who have this seemingly vague diagnosis. Once you read people’s experiences over time, you will start to see similarities. And you will see the similarities in lupus too.

Just glad I didn’t have to go to rheumatology school.

XxK

[Bbmuso in reply to KayHimm]

Hi there, following thread, just wondered what is HSS material??

[KayHimm in reply to Bbmuso]

Hospital for Special Surgical is an academic medical center in the US. Their patient information material is very good, particularly on undifferentiated connective tissue disease.

Go to: HSS, UCTD

If you don’t find it, let me know.

[KayHimm in reply to Jadaboo4]

What is abnormal in your urine? We are twins so far.

[Jadaboo4 in reply to KayHimm]

Protein and blood in urine

[KayHimm in reply to Jadaboo4]

It becomes clearer why your rheumatologist is trying so hard to get a handle on any other associated illnesses to your Sjogren’s.

Such detective work. She has to ask herself a thousand questions. Does this symptom explain this? How does this relate to that? What am I missing?

That is what showed up in my urine. Had urinalysis weekly, then monthly, for over a year. I worked in a hospital so that technician willingly counted those cells under a microscope.

Patients do sort of express themselves eventually. Patience is important in this diagnostic process. And educating yourself.

Interesting how much we have in common.

You are doing great just to get out of bed and fight another day.

XxK

[Jadaboo4 in reply to KayHimm]

Thank you! I can’t even explain the relief I feel knowing that somebody understands and has gone through what I’m going through too , and seeing that it will get better at some point.

My hardest thing is learning my limits and understanding that I may not be the person I once was a year ago. Also not being able to drive long and explaining to people how I’m feeling because I look normal without sounding like I’m complaining.

[KayHimm in reply to Jadaboo4]

So hard. Glad you found us. Look at your history and see if you can see a correlation with sun exposure. The big benefit of knowing what was wrong was being diligent about avoiding the sun.

Headed to doctor’s appointment but get advice from others here about sun protection.

[soul22 in reply to Jadaboo4]

Your welcome Do talk with rheumatology consultant regarding levels aswell

I understand that feeling you got better kind you at moment maybe a hobby u can try .

I'm doing that take care

[LalaH52 in reply to soul22]

Anti Ro is usually associated with Sjögrens Disease and is one of the diagnostic criteria. I’m Anti Ro 52 and have Sjögrens. More recently I have face rashes which the rheumatologist thinks is probably due to Anti Ro. Anti Ro is a bit of a rogue and plays dirty amongst a number of autoimmune diseases such as skin lupus, lupus, autoimmune liver disease, interstitial lung disease, myositis, scleroderma.

[KayHimm in reply to LalaH52]

Well put. I never had this perspective before. An NHS hospital has an excellent description of anti-Ro antibodies and their association in different connective tissue diseases.

[OldTed60]

I have Systemic Sclerosis but was initially misdiagnosed with seronegative RA and Sjogren’s. Or rather the Sjogren’s wasn’t a misdiagnosis but it’s now classed as Sicca Syndrome (secondary Sjogren’s) despite very positive lip biopsy 8 years ago. I carry a rare scleroderma antibody and a nucleolar ANA of just 1:80 now - used to be much higher prior to being on treatments though. Your anti Ro suggests Sjogren’s rather than UCTD although it’s quite common to have both I believe. Sjogren’s is often misdiagnosed as Fibro - although mine hasn’t been so far. DMARDs and steroids often reduce the titre of ANA - hopefully because the medications you’re are working.

[KayHimm in reply to OldTed60]

OldTed60 -

I think trying to interpret immunological results is not fruitful. Only a rheumatologist can do that within the context of the totality of the patient’s symptoms.

In fact, positive ANA with Ro or La antibodies is likely common in undifferentiated connective tissue disease. Often we lean toward lupus but without anti DNA or SM antibodies. I am one of these UCTD with anti LA.

It seems Jadaboo4 ’s rheumatologist is concerned about lupus based on her symptoms. The AVISE test is a more advanced and thorough test for lupus, not a general test for autoimmunity.

I am throwing in my two cents because already her rheumatologist is trying to help @Jaadaboo4 understand her illness.

One question - but it is just a technicality - is whether those with UCTD and anti RO/ La tend to have sicca. I certainly did, though it majorly receded.

Having those antibodies never made my rheumatologist lean toward Sjogren’s. I am still UDCT, mild lupus variant.

Kay

[OldTed60 in reply to KayHimm]

Hi KayHimm. I’m not trying to interpret at all. My main point, based on personal experience, was that ANA can fluctuate and even disappear with steroids and Dmards etc so was simply advising not to read too much into this shift. However I think we will have to agree to disagree about significance of anti Ro - which is also known in places other than UK as SSA, short for Sjogren’s Syndrome Antibody. I know this because I have discussed over the years with a handful of rheumatologists, one a Sjogren’s expert. Also I am on some international Sjogren’s forums and have a friend who is medical dr with Sjogren’s.

So, despite it not being my own main seropositive disease, I know that anti Ro in presence of Sicca is usually viewed by rheumatologists as clear confirmation of seropositive Sjogren’s Disease. It may also be present in RA, Lupus, Systemic Sclerosis, UCTD and MCTD of course - but generally those who carry this antibody along with symptoms such as joint pain, neuropathy, swollen glands and Sicca will be diagnosed with Sjogren’s. Here’s a science-direct link confirming this perspective:

sciencedirect.com/topics/me...

[Jadaboo4 in reply to OldTed60]

Hi Sjogrens was one of the original diagnoses because I did and still do have dry mouth, dry eyes and was having trouble swallowing and every time I get really inflamed at the end of the day I lose my voice. I don’t know why it was taking away as one of my diagnoses

[OldTed60 in reply to Jadaboo4]

Well it’s worth asking why when you next see your rheumatologist. I now find it strange to suddenly read Sicca Syndrome underneath Systemic Sclerosis, rather than Sjogren’s, on my rheumatologist’s letters . However I saw an eminent scleroderma rheumatologist last year and he was equally baffled at how Sjogren’s has been blamed for just about all of my much more scleroderma-like symptoms over the past 5 years, before that RA, when I don’t even carry anti CCP or anti Ro anybody but do carry a high titre, highly specific antibody for systemic sclerosis.

I showed him a print out of my lip biopsy result and he then agreed that I do also have seronegative Sjogren’s. Before I saw him I was half expecting him to rediagnose me with UCTD. But he found very specific changes in my nailfold capillaries as well as a completely paralysed gut (now I have a stoma) and said my SSc diagnosis was unequivocal. I don’t have much obvious skin tightening but he said this was because I’m so hypermobile! X

[Jadaboo4 in reply to OldTed60]

I’m definitely gonna ask why. Im glad they were able to figure it out for you. Thank you so much for your help the information you shared is very helpful and it bring comfort knowing I’m not crazy or alone

[OldTed60 in reply to Jadaboo4]

Oh no you are definitely not crazy or alone with this - it took 12 years for me to get correctly diagnosed - and you are very welcome 🤗

[KayHimm in reply to Jadaboo4]

I bet it isn’t really taken away. It is part of your UCTD. Lupus patients often have Sjogren’s too. I had the whole ball of wax when I was first symptomatic - eyes, nose, throat and even ears. My ANA was eventually positive with anti La antibodies. So much like you.

In those days they called it sicca syndrome or secondary Sjogren’s. Ask your rheumatologist. You have too many other lupus symptoms for him to call you Sjogren’s, right? Photosensitivity facial rash, abnormal urine. I was sent for special lupus testing for those symptoms.

It’s the overall picture. Ask your rheumatologist where your Sjogren’s fits in.

One thing you don’t want to do is go down the rabbit hole of trying to get a specific diagnosis. Your rheumatologist is already open with you and doing everything he can. The main issue is medication and predicting progression. Second opinion won’t help in your case. If you would feel better, do it. But the bar is very high for a lupus diagnosis. The rheumatologist will likely say they see lupus signs but diagnosis not absolutely clear. So UCTD.

XxK

[Jadaboo4 in reply to KayHimm]

Okay I understand thank you so much 😊

[KayHimm in reply to OldTed60]

I just read the two main antibodies in UCTD are anti La/Ro and anti U 1 RNP.

A lot of people forget that UCTD is its own category. It is not lupus, or Sjogren’s or scleroderma. Hard to wrap our heads around but important to understand.

Yes, of course it is used to diagnose Sjogren’s. But these auto antibodies are tricky. Anti Ro is diagnostic for cutaneous lupus too. Unbelievably complicated.

[OldTed60 in reply to KayHimm]

Yes of course it’s complicated - nothing is black and white in rheumatology! According to the Science Direct link I posted Ro is most commonly found in Sjogren’s at 40-60% I think whereas it’s only found in about 20-30% of Lupus patients.

But broadly each rheumatic autoimmune disease carries its own antibody and my rheumatologist, a lupus specialist, calls anti Ro “the Sjogren’s antibody” - just as RA is most associated with anti CCP and Lupus is most associated with anti dsDNA. I am not arguing that the various antibodies aren’t also often found in other various diseases. Although I was told by one eminent rheumatologist that UCTD was diagnosed when a person carries either several or no ENA antibodies just ANA - not if you carry just one specific one. She said U1 RNP is the antibody associated with MCTD. At the time I saw her I had a borderline anti Th/To which is fairly specific for limited systemic sclerosis / CREST. Later this was pipped by a consistently high diffuse SSc antibody, U3 RNP. Not all hospital labs will even look for these rarer scleroderma antibodies,

Of course these classifications can change and each of us have our own singular permutations. But generally speaking anti Ro with the classic systemic symptoms is usually how Sjogren’s is diagnosed. And Jadaboo4 has commented now saying they have Sjogren’s symptoms so to me this looks quite differentiated now. But obviously this is for their rheumatologist to determine, not for us.

[KayHimm in reply to OldTed60]

She sounds like me. Even with Sjögren’s syndrome, she will be UCTD. Many UCTD have Sjogren’s symptoms.

Best not to look at lupus or Sjogren’s but UCTD. Not sure what your rheumatologist was referring to.

UCTD tends to lean lupus. I thought this wasn’t the case but Medscape says most common.

Again, best not to try to interpret labs or diagnose. There is a reason her rheumatologist did the Avise test.

I know you have a scleroderma but it might be helpful for you to read how rheumatologists think when diagnosing UCTD and how they decide what points in what direction.

Undifferentiated connective tissue disease Mitnick, Askanase

[KayHimm in reply to OldTed60]

Maybe the distinction is Sjögren’s syndrome versus primary Sjogren’s. I have UCTD with Sjögren’s syndrome. But as I, like Jadaboo4 had other lupus symptoms, they continued with testing. 24 urine, skin biopsies, anti DNA, and whatever else to see progression.

If you look at the interlocking circles in UCTD, it is clearer that Sjögren’s syndrome is part of the overall disease in many people. It is not seen as differentiation.

[OldTed60 in reply to KayHimm]

Well I believe it should be - and increasingly is by the leading Sjogren’s charities, EULAR and ACR. I accept that it’s not as serious from a mortality perspective as Systemic Sclerosis but then nor are Lupus or RA. But from a quality of life perspective Sjogren’s Disease (rather than Syndrome) is pretty wretched. I say this because I’m in middle of major dental work due to Sicca and also struggling with mild pneumonia. My mouth is a mess of ulcers, my voice is consistently faint with dysphonia and I’m struggling to breathe with dyspnea.

[OldTed60 in reply to KayHimm]

Ps and cutaneous Lupus / dSLE is often a cutaneous manifestation of seropositive Sjogren’s so we aren’t talking at cross purposes really?!

[KayHimm in reply to OldTed60]

No, don’t see that at all

[OldTed60 in reply to KayHimm]

Kay I’m not sure how many you’ve seen or how long you’ve had UCTD. But I’ve seen 9 rheumatologists in 13 years, was trained up as an RA ambassador many years ago and my current rheumatologist is wonderful as I’m sure those here who are her patients would agree. If she says anti RO is the Sjogren’s antibody then I trust her entirely. And it’s you who are interpreting labs and symptoms to = UCTD/ Lupus not me. I just mentioned in my first comment that anti Ro is most associated with Sjogren’s and I think, if you search online, this is a commomly recognised fact rather than a matter of speculation. Facial rashes triggered by sun or fluorescent lighting are common in all CTDs - even I have them and I don’t have dSLE or SLE but likely do have mild DM overlap as my SSc antibody and other symptoms suggest. Finally the SRUK communities are full of people diagnosed with UCTD - many of whom are now also friends of mine. Most of them lean more Scleroderma or Sjogren’s than Lupus. I have more friends with UCTD than I have friends with Scleroderma - probably because it’s more common. Same with Sjogren’s.

[KayHimm in reply to OldTed60]

OldTed60 -

Could it be your presentation was a bit different?

Sorry if I appear to be diagnosing her. Her rheumatologist is doing the AVISE test for lupus.

Maybe what it is is that many people - whether with RA, lupus or UCTD have secondary Sjogren’s.

I gave my example. My situation is similar to Jacaboo’s. The UCTD was made knowing of Sjogren’s. Maybe ask your rheumatologist.

[OldTed60 in reply to KayHimm]

I too simply gave my own example Kay - recognising the same RA/ Sjogren’s symptoms and diagnoses my rheumatic journey also started with. As my first rheumy said when he diagnosed me with seronegative RA in 2011 “things can change so keep an open mind”. And so I did. I actually suggested UCTD to him and to others I saw further down the line when he retired but they all felt no because my symptoms and signs were already quite differentiated even then .

And no I don’t think my presentation of either Sjogren’s or Scleroderma are that unusual. Systemic Scleroderma has 13 antibodies in all and is the most heterogeneous of all these systemic autoimmune diseases.

The Sjogren’s UK charity and the American UK Sjogren’s Foundation both refute that Sjogren’s should be classed as secondary now. It’s viewed as an old hat / retrograde distinction. These days it’s “associated” and this could equally apply to UCTD or any of the others ie “Sjogren’s with associated UCTD/ Lupus/ RA” or “Overlap Syndrome” if we have more than one full blown CTD. I think this is why mine has now been downgraded to Sicca Syndrome - so that non specialists know which is considered the big one for me. For some though the big one is Sjogren’s and in my case I think, in reality, they take turns.

[KayHimm in reply to OldTed60]

Here is the new terminology in the US. Sjogren’s disease associated with another connection tissue disease. Syndrome and secondary has been discarded.

So the Sjogren’s disease could be confirmed but another associated disease still investigated.

Makes sense to me.

[KayHimm in reply to KayHimm]

Sorry. I thought I answered your question. I was diagnosed forty years by an academic rheumatologist in New York City within one and a half years after symptoms began. My internist was amazingly alert to something inflammatory and eventually sent me to him. I also went to a dermatologist who ran the connective tissue clinic at HSS, the best hospital for rheumatology in the US.

My rheumatologist was always blunt with me that rheumatologists would not all agree on my UCTD diagnosis. Some would say lupus, some UCTD and some nothing. Still with the same rheumatologist. We are both old now.

[StriatedCaracara in reply to KayHimm]

Re: diagnosis I really like the "some would say lupus, some UCTD and some nothing.."

Think it is the best summary I have heard in my few years of experience here. Then the implications each outcome has too. Thanks for sharing 💯

[KayHimm in reply to StriatedCaracara]

I am not sure he would say that now. I was diagnosed with false positive syphilis test and negative ANA. ANA became positive as well as anti-cardiolipin and IGG.

But rheumatologists should be honest that in the early stages they may not agree, particularly with undifferentiated connective tissue disease patients. Lupus has at last a classification .

Most people are not easy to diagnose.

[KayHimm in reply to OldTed60]

Let’s wait and see what the rheumatologist says. I was diagnosed with UCTD forty years ago in New York City. My dermatologist ran the connective tissue disease clinic at HSS. the highest ranked rheumatology clinic in the US and likely in the world.

I think the problem is you are trying to understand an illness that is not what you have. On other sites, they delineate between lupus and UCTD and people need to make that known. Otherwise, a lot of confusion is created.

Yes, you can site statistics on Sjogren’s and your friends with UCTD may lean scleroderma. But on this site people either have or are being worked up for lupus. Many will end up with UCTD with lupus symptoms. And sicca syndrome.

I am sorry you had to go to so much rheumatologists to get a diagnosis. But that doesn’t mean that is necessary for everyone who has an UCTD diagnosis. It is a real entity. Maybe you evolved. Jacaboo may too.

As I said, I don’t think she lost her Sjogren’s diagnosis. I think her rheumatologist is doing more testing, presumably for lupus since he ordered a non-approved and expensive AVISE test.

[OldTed60 in reply to KayHimm]

I will leave you to your own assertions Kay - no point in us arguing - it’s not fair on the OP. But I would just add that actually I do have quite a broad understanding of all these diseases and have also seen and spoken to world ranked experts in world ranked centres. Last point - the reason I and many others join this community as well as others is to learn more and to support those who may well have simply arrived here unaware of the rarer autoimmune diseases. And also because other CTD communities are much smaller and quieter and/ or aren’t hosted by UK charities such as this one and NRAS. If Sjogren’s UK hosted an HU or other online communities then I’m sure quite a few would take their posts there instead. Commonality is the main thing however and as PMRpro often points out here we each have our own unique presentation of CTD/ systemic autoimmune diseases - meaning that you have KayHimm CTD and I have OldTed6O CTD and so on.

[KayHimm in reply to OldTed60]

Not all sites organize that way for their own reasons. Reddit divides between diagnosed only, looking for diagnosis, and encourages people with like diagnoses to respond.

If you see the universe of systemic connective tissue diseases as one big family that can relate to each other, that is a good approach. But people can have problems with that. As an example, I learned that we UCTD have sort of invade the lupus sites now that the diagnosis became so common. The moderators intervene to state that lupus and UCTD are not the same. Though some things are similar, many aren’t.

The lupus patients rightly say that we should accept our diagnosis and be glad we don’t either live with kidney disease or fear getting it. It was an eye opener.

So yes. if I can help people like Jadaboo4 have confidence in her diagnosis and know she has company, I feel good about that.

Maybe Lupus UK should think about dividing UCTD and Lupus. I think it would be helpful.

[OldTed60 in reply to KayHimm]

Perhaps you should take leaf out of my book and follow the Scleroderma & Raynauds/ SRUK community here as well as this one? You’d see that many there are diagnosed with UCTD. Indeed I find my posts there are often taken over by those diagnosed with UCTD - which is fine by me of course 😉😊

[KayHimm in reply to OldTed60]

I know that many with UCTD evolve into scleroderma. My point is that these people may find more support with their peers on UCTD sites or Scleroderma sites. It sounds trivial but for people trying to navigate lupus. adding in RA and myositis or another disease seems to just complicate matters.

What patients should be asking maybe is as an UCTD patient, where am I on the continuum?

The issue of photosensitivity is complicated but is addressed by rheumatologists. Everything comes down to a constellation of symptoms. And no, I don’t think we all have so much in common. We have some things in common. But I would have no more in common with a person with RA than a person with dermatomyositis. Interestingly, there is usually something I have in common with those with UCTD. It is a thing, not a “don’t know what is wrong” kind of thing.

[OldTed60 in reply to KayHimm]

This is why I think you might find being on more than one rheumatic disease forum, particularly SRUK, useful. Others here use both communities to post and get support from fellow UCTD patients. And you may find others who are very like you there. UCTD people often have Raynauds and Erythromelalgia too so they use SRUK to ask questions relating to these two vascular extremes. Up to you entirely of course. I come and go from other communities such as NRAS and thyroid uk just because it’s easy to leave when the news feed gets overwhelmed and I can check to see how old friends are doing. Sometimes it’s also good to read about treatments from a different perspective. I don’t have inflammatory arthritis now but I think the puffy tight hands of scleroderma often get people misdiagnosed with RA initially. And many there are on Rituximab just as many here take Mycophenolate - which can be very helpful at times too. Being on various communities can be an eye opener and give us much needed fresh perspectives, ditto in reverse. So I make no apology for coming here to this lupus UK community sometimes and offering my own perspective where it comes to questions such as this one here 🙂

[KayHimm in reply to OldTed60]

Agree that can be helpful. None of us fits squarely into anything. I have had one of my most rewarding experiences with a woman with possible neuro lupus. Neurologists aren’t able to know what antibodies cause what. But my frequent brain MRIs have given me lots of tricks which I shared. Who knows if we end up with the same thing? She was happy to know to get Valium.

[Tiggywoos in reply to KayHimm]

This is so fascinating ! When husband was in hospital with organising pneumonia (and colitis ) they tested his antibodies . He was positive for both of those! BUT big but , because he had no symptoms whatsoever he wasn’t seen again in clinic . Guess shows importance of symptoms 🤔 where rheumatology concerned x

Sorry that was post I was replying to

I just read the two main antibodies in UCTD are anti La/Ro and anti U 1 RNP

[soul22 in reply to OldTed60]

Learning alot reading replies I make nasty antibody at times forget what was come up twice when temporarily off hydroxchlorquine for acute illness.

AE stopped it this time they phoned my rheumatology consultant informed if eating give it's not immune suppression drug .

That methotrexate is,however does suppress at cell level to reduce bad auto immune antibodies.

Hence dmard I'm discease modifying drug

[KayHimm]

By the way, your rheumatologist will be watching you very closing for signs of progression. Your inflammatory joints might be a sign. We know one person with UCTD who progressed to lupus after a pericarditis flare.

Changes in diagnostic labs are not the only thing that represents progression. Once I had protein and red in the urine after sun exposure. Bad omen but urine totally cleared after about a year. Lucky.

It will take a while to see how you do. Do you have photosensitivity?

XxK

[Jadaboo4 in reply to KayHimm]

Okay and yes I do have photosensitivity I get a rash on both checks under my eyes but it does not go on my nose like the butterfly rash and it stays there for a day or so.

[KayHimm in reply to Jadaboo4]

Well, that is another reason your rheumatologist is worried about lupus. Has he asked a dermatologist for a biopsy? Sometimes they do that.

Stay out of the sun!! It majorly stimulates these antibodies 😩😩

[Jadaboo4 in reply to KayHimm]

No she hasn’t ask for one yet

[KayHimm in reply to Jadaboo4]

That is also tricky to diagnose. I don’t think the rash has to be on the nose. I only say that because the only facial rash that my rheumatologist thought was the butterfly rash was like an upside down triangle on each cheek. The trash came after a ferry ride when I was wearing sunscreen and hat. It didn’t look that different from my non lupus rosacea or flushing rashes.

I would ask your rheumatologist if he thought your rash was the butterfly rash. That is an important thing to know. If he thought it was, it would be another reason he wanted the “better” lupus test.

Asking questions is the key!

[Jadaboo4 in reply to KayHimm]

Yes I took a picture and she said that it was very similar but didn’t extend to the nose

[RosieA in reply to KayHimm]

Rats! Was that me? x

[KayHimm in reply to RosieA]

Yes, you are the patient who differentiated! Interesting, I read that inflammation in the joints is a predictor of transition to lupus. You always had arthritis. Your rheumatologist watched you closely. I was predicated to stay mild. Maybe that is one reason. Never had inflammation in the joints.

Hope the new meds are helping!

XxK

[RosieA in reply to KayHimm]

Seemingly, seriositis is a lupus symptom that happens more often as we age. Deep joy! I am now struggling with pericarditis and pleurisy but just had my Azathioprine doubled. Sadly, I was also told that my disease was mild at the beginning - just unlucky I guess. I think I'm on an upward trajectory but just a slow one.

This whole UCTD discussion is so very difficult. There is a terrible dearth of sensible, accessible information. Those on the forum tend to search out from research documents or sites signposted by each other but at the beginning this is overwhelming, confusing and so dreadfully unnecessary. UCTD really deserves a charity in its own right or a designated spot within the major charities that set out information or support.xx

[KayHimm in reply to RosieA]

Totally agree, Rosie! When I was diagnosed with UCTD I thought I was the other one. Thought my rheumatologist just didn’t want to tell me it was lupus 😅 .

[RosieA in reply to KayHimm]

Perhaps we ought to reach out to Lupus UK with the suggestion that they provide separate information. x

[KayHimm in reply to RosieA]

Yes, good idea!

[KayHimm]

haha - as I said, the bar for lupus is very high. So she sees “probable” “maybe” “likely” .. I have a lot of sympathy for these rheumatologists trying to evaluate each sign and its relevance.

After joining Lupus UK and seeing so many UCTD patients here who were on that border but not officially diagnosed, I got the picture.

Your rheumatologist sounds good. Impressed she got you that AVISE test. I still have the same rheumatologist who diagnosed me forty years ago. He said I should do well. Still here. Seeing him at 11:00 am tomorrow.

[Jadaboo4 in reply to KayHimm]

Yes she seems to be very thorough she’s my second one the first one was a complete joke, never even examined me just gave me plaquenil from the beginning and that’s it after he seen the positive Ana and said it’s too early to diagnose anything. I’m glad you have a good doctor too

[KayHimm in reply to Jadaboo4]

Good for you to change. Any rheumatologist who manages to get that Avise test is fighting for you. Our FDA in the US hasn’t approved it. Our insurance companies don’t want to pay so the rheumatologists have to advocate for it when a patient is hard to diagnose.

Honestly, the good ones really do want to get the most accurate diagnosis possible. I was diagnosed before there were a lot of these good tests. My rheumatologist sent my blood up the street to a researcher who worked with a famous UK lupus expert. I was negative the antibody then, but positive later when it was a regular lab test.

I hope you saw my post that in the US Sjogren’s stays a separate disease. It can co-exist with other connective tissue diseases. So ask your rheumatologist if she is trying to find the associated illness.

They can’t always tell what antibody causes a given symptom. Asked me neurologist about two antibodies and which caused what. He said he couldn’t say, Get used to lots of tests but no certainty 😩

[Lizzo32]

Hi  Jadaboo4 ,

Sorry to hear about the ANA panel confusion.

I know medical interpretations vary and so do labs.

This is a very good read from the MOUNT SINAI Hospital on what the various titres (dilutions) mean:

mountsinai.org/health-libra....

It’s very readable. There are also good links to other forms of lupus eg MCTD, CTD, Sjögren’s etc.

Us lupus sufferers unfortunately have to endure so much ignorance and nonsense from those who are “supposed “ to know but don’t. Sad.

Have a read! BW

[Jadaboo4]

Thank You Everyone Again,I went to the doctor and now they are saying that the Avise test is showing I don’t have UCTD and I have just The Rheumatoid Arthritis and Fibromyalgia. She increased my methotrexate and wants me to go to pain specialist to see if he can also add pain medicine to help the pain until the methotrexate start working or I might have to try Humria

[OldTed60 in reply to Jadaboo4]

I do hope you’re satisfied with your rheumatologist’s opinion? If not then I believe, from reading a recent discussion on a scleroderma network, that Avise is unreliable for any autoimmune disease other than Lupus. The man, Ed Harris, who explained this to another member, is an American expert advisor on Scleroderma networks, having dedicated his later life to setting up the Scleroderma Education Project. If you’re interested in reading more then you can look up this project and sign up for Scleroderma e-News. There’s also SMART Sjogren’s patient forum where people are exceptionally well informed, particularly SarahMD who is a doctor with Sjogren’s. There are different lab panels for each autoimmine disease subgroup - so it’s important for general rheumatologists to check using several lab panels such as ELIA/ ELISA and LABCORP I’ve been told. Many of us will be negative on one panel but positive on a different one.

[Jadaboo4 in reply to OldTed60]

I’m still researching even though my doctor stated this and will ask her for the injection form of methotrexate instead of the pills to see if that helps. I still think I’m in the trial and error phase and will have to keep waiting to see if it changes and what helps me feel better.

[Lizzo32]

An exact definition of UCTD will never be found. Even so called experts are confused let alone patients:

creakyjoints.org/living-wit...

👆☝️☝️⬆️ Just one websiteout of 100s!

“Maybe it’s the word “undifferentiated” that makes undifferentiated connective tissue disease (UCTD) seem a little vague. But it is a real medical condition. The Hospital for Special Surgery defines UCTD as a “condition in people who have symptoms and lab test results that indicate a systemic autoimmune disorder or connective tissue disease, but which do not meet enough such characteristics to indicate a diagnosis for a well-defined connective tissue disease.”…

⬆️🥹🙄🤔👀

Blah, blah, blah etc etc 🙄

exagen.com/tests/ctd/

⬆️⬆️ More tests!👆

Note, “Exagen is a leading autoimmune diagnostics company…” Profit making?👆