Change of diagnosis : Hi All Having been told by my... - LUPUS UK


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Change of diagnosis


Hi All

Having been told by my Consultant’s Registrar in August that I had Lupus SLE , I went back to see the Consultant today and she said that although I have the antibodies and symptoms also , she would rather call it undifferentiated connective tissue disease with additional fibromyalgia until I go back in 6 months time for review. Have others experienced this along the way?

All best wishes 😊

34 Replies

Snap originally sle then mctd now he’ssaying uctd but he said don’t worry the Meds are the same hydroxy methatrexate folic acid and tramadol mmmmmmmmmm lupus is very hard to diagnosis though and can take yrs to get a proper diagnosis

Seren65 in reply to Ianrussell69

Thanks for your reply Ian . That’s what the slightly frustrating thing is . I’m on pregabalin and duloxetine for nerve pain with Naproxen as back up . Because of this , the rheumy wants me to just stay on them for now and then will see whether to start me on other meds in March when I go back . It feels an uphill climb at the moment ! 😊

It does seem like many rheumys have a fairly relaxed attitude towards labelling our conditions. Mine started with "?Sjogrens and Interstitial Lung Disease", then used "Undifferentiated Connective Tissue Disease" and "Overlap Syndrome" on subsequent letters. Later, he added Fibromyalgia. This year, I have developed polymyositis and a borderline positive ds-DNA result. The most recent printout of my diagnoses from the GP surgery has me down as "Connective Tissue Disease NOS "[Not Otherwise Specified]. So who knows what label I will have next. But as you say, the main thing is to get the right treatment x

Seren65 in reply to whisperit

Hi whisperit

As you say - the most important thing is getting the right treatment. I also don’t really want to push for a label but I guess it’s just that sometimes knowing what you’re dealing with helps you to make informed decisions . That’s where Lupus Uk have been invaluable with the members’ pack information booklets etc and this site of course!! X

Hidden in reply to whisperit

What they probably mean is that "we all know you got SLE, but I/we won't give it to you."

Seren65 in reply to Hidden

Sorry it’s taken ages to reply . It’s not that I want them to say I’ve got SLE but at least when I was initially told that , it gave an explanation for so many of my symptoms. Thinking about it , I can see why it’s so important for them not to misdiagnose people though. Deep down I think that’s what my final diagnosis will be but who am I?!!!😊

Hidden in reply to Seren65

Not at all, please don't worry. I have seen numerous posts that rheumatic diagnosis changes every time you see a different clinician/consultant/registrar or move abroad where different attitudes and technologies used. I also do wonder that's partly because autoimmune diseases aren't static. It's all too common to have several "overlap" symptoms, suggestive of different diseases. Having said that I see the distinct trend that they do not want to diagnose patients with SLE too easily. There must be a reason for that. Good luck.

Hi Seren65......this is not uncommon but doesn't make it easier! Sorry you're having to go through this. Similar happened to me when my consultant retired and someone new took over. Advice is: listen to your body and the little voice in your head. And don't hesitate to get another opinion! Seeing a consultant from one of the specialist lupus centres of excellence (list available from Lupus UK) can really help with diagnosis, treatment and support. If your GP won't refer you to one of the centres, you might be able to get things moving with an initial private appointment. Good luck and don't give up! Tess x

Seren65 in reply to Tess_Little

Tess- Thanks so much for your reply and your kind thoughts. I will definitely not give up ! I’ll see how I get on over the next couple of months and take it from there. Take care x

You have a good doctor. Until a patient clearly fits a diagnostic category, UCTD is the appropriate diagnosis. This is important for prognosis, treatment and research. Many people stay in the undifferentiated category. That tends to be a good thing. You will be monitored according to need and treated on the basis of symptoms. Hope you do well. I think you will. Feel free to PM me. I have done well with this diagnosis.

Seren65 in reply to KayHimm

Thanks Kayhimm

It makes total sense what you’re saying. When she initially said it , I was thinking it sounded a bit of a vague diagnosis but having had input from wonderful people like yourself and having done some research , I realise it probably does seem to be the right way to go . X

KayHimm in reply to Seren65

Glad I was helpful. Since better testing they are able to differentiate between the classic presentations and typical antibodies and those of us who borrow from different categories. It is actually easier to see graphically. You might want to Google Hospital for Special Surgery/ UCTD for a good description and visual. We should form a club! My rheumatologist says we may be the largest group in rheumatologist practices. Surprising, right?

As long as they are seeing me checking me regularly, and giving me the appropriate medication I don't much mind what they call it.

The medics themselves are often reluctant to give an definitive label.

Seren65 in reply to Lupiknits

I’m starting to find that out about the medics re: giving definitive answers but as you say, as long as we’re being kept an eye on , that’s the most important thing.

This happened to me. It unfortunately meant that my rheumy then decided to only see me once a year. So I cope alone with the symptoms and treat myself mostly with cbd. They are reluctant to give a definite diagnosis in my experience.

Seren65 in reply to happyp

So sorry to hear that. How are you feeling at the moment ?

Hi I to have experienced the same I have Lupus SLE however I saw a relief Dr for 5 minutes to be told it is not Lupus but fibromyalgia (I have shrinking lung syndrome) this has been caused by the Lupus?...

What ever it is I'm in pain everyday and find the Lupus very challenging. Any how keep your chin up and keep living. Love to all


KayHimm in reply to Snafu123

I actually do not think what you are describing is exactly the same as what Seren65 is describing. It sounds to me like the doctor may have been saying some of your pain is from fibromyalgia, which is associated with lupus. If you have been diagnosed with lupus, a change in diagnosis to fibromyalgia would be huge to a doctor. Fibromyalgia is not inflammatory and lupus is. The immunosuppressant drugs that are used in lupus are not used in Fibromyalgia. Seren, on the other hand, is describing a common situation when a rheumatologist - they have the most training in diagnosing autoimmune diseases — knows an autoimmune disease exists but the patient either lacks criteria or unclear lab results to make a definitive diagnosis. They use the term undifferentiated connective tissue disease or lupus- like connective tissue disease to try to be accurate. It doesn’t seem more accurate to us patients or even doctors in other specialties, though! I think you should call your doctor right away to get your situation clarified. Let us know what happens.

Seren65 in reply to Snafu123

Sorry to hear you’re struggling- Maybe you should seek another opinion and get onto the correct treatment plan for you . 😊

Know just what you mean. Doesn’t it make you want to 🤬😡.

I was for years fobbed off with anxiety depression osteoarthritis; then mild autoimmune disease; let’s call it lupus; then I don’t have it!! Need a new hip; oh no you don’t, you have fibromyalgia take amitriptyline; well actually bloods indicate maybe something after all, but for time being let’s just treat as fibromyalgia!!! And hand you over to the care of your GP!! See me again if you think necessary 🤦🏻‍♀️🙇🏻‍♀️ Meanwhile aches and pains and umpteen other problems just keep on keeping on - and I am sooo tired 😓- I am a very patient patient- but perhaps I need to start getting a little irate with medics.

So many of us seem to be living in this no mans land - surely it’s time we were taken seriously and the docs acquired a little more knowledge of AI conditions.

Seren65 in reply to grannypat68

It feels exactly like I’m in No Man’s Land ! The Consultant was lovely and stressed that UCTD is a recognised condition but I initially felt I’d hit a brick wall metaphorically.

My situation is similar. My rheumatologist is leaning towards thinking I have lupus, but is callining it undifferentiated connective tissue disorder. I’ve had a couple tests come back that make her feel it’s lupus and have been put on medications to treat it as such. But the criteria for diagnosing lupus is very specific, and if you don’t meet 4 of the 11 criteria, they won’t call it lupus.

KayHimm in reply to Jodirae

So many of us in this category now. Good to hear from others. My rheumatologist has explained to me that they actually look at more than those criteria. Talk about a tough diagnosis to have to make! In my case, I may have four criteria but low positive ANA, normal complément, and not the most specific antibodies of lupus. They put emphasis on certain labs and symptoms over others. I guess that is why they send us to doctors who spend an extra three years learning to diagnose us! You are clearly between treated based on symptoms, not simply a label.

Seren65 in reply to Jodirae

My tests - particularly my dsDNA point to Lupus but as you say it is a case of meeting the criteria and at the moment, my Consultant doesn’t think that I do completely . 😊

I was diagnosed with Lupus in 2010 with positive ANA and high ESR markers in my blood . And then about 2 years later the blood test results came back negative for Lupus and the ESR went down to normal levels, but I was still getting similar symptoms (but also increasing burning/tingling pains down my arms and legs) Now since 2016 I have a diagnosis of Fibromyalgia, a small benign brain tumour (found when looking for a cause for the burning/tingling - but actually put down to having Fibromyalgia) and complex migraine. I wonder when it's all going to end??!!!

Seren65 in reply to Maya23

I always have high ESR for whatever reason. I also get burning/ tingling pains( nerve pain) down my arms and legs for which I am on 2 different meds . So many of us are affected in similar ways with regards to symptoms but also in regards to our experiences.

Maya23 in reply to Seren65

Yes, it makes you wonder ..!

Yes, this happened to me as well in the US. My rheum was more concerned about how a official dx of Lupus would scar my insurance record, though, so diagnosed me with UCTD. I was breastfeeding at the time and couldn’t take any medication for my joint pain, so in those 6 months I researched natural options. I met a girl on Facebook who basically put her pain into remission by changing her diet, mostly no gluten. I dragged my feet for months before I tried it. I started with eliminating gluten 100% and had my toddler and baby do it too. The results were AMAZING, not just for me but for my kids. 80% of my 2 years of pain was gone within a week or 2!!! I could move my hand again and my knee pain was very manageable. I lost about 10lbs of water/inflammation weight in that time too, not even eating much “healthier”. Gluten was ravaging my gut. It’s been 6 years, I’ve never taken medication, just diet, supplements and magnetic jewelry, and just a few months ago my ANA went negative for the first time after declining for years, and I have NO pain! I highly recommend you researching it and trying it! The Paleo Mom website helped me tremendously. She has thousands of people who are healing from autoimmune disease, including herself, primarily through food & lifestyle changes.

My daughters and I are trying to eat an anti- inflammatory diet but haven’t gone completely gluten free . Will really consider that now - thanks for sharing your experiences 😊

It really has to be 100% eliminated. It can take 3-4 weeks or more for gluten proteins to completely leave your gut. Dairy can also be a big problem for many people. For me, gluten is the biggest offender. I hope you find much relief!

I've heard stories of it, but it usually goes the other way around. Does she think you have a cross over syndrome that would support MCTD? I'm really curious why she would back away when you meet the criteria? IMO - sounds like a bad plan. If you have Lupus, you should be treated with even just the basics. It won't hurt you and will keep you from going backwards. Super strange ... sorry they are causing confusion. Getting a firm diagnosis is so helpful in moving on with life. Best to you :)

Seren65 in reply to katidid

I’ve got positive antibodies for Lupus plus I feel, (as a mere layperson!) that I meet the criteria. She did say that because my chest X-ray was clear and that my renal function wasn’t unduly compromised that she would rather watch and wait. If I deteriorate greatly , I’ll go back to my GP.

katidid in reply to Seren65

Oh my ... I understand that no doctor wants to give the diagnosis of Lupus b/c it is so life altering. But, clear lungs and good kidneys are in no way complete exclusion criteria. As one of the other users mentioned, there are 11 criteria, of which you must have min of 4. If you meet those, I would go back immediately and demand even basic treatment (e.g. Plaquenil) or a more thorough exam & discussion. Lupus can progress quickly and, at least personally, uncontrolled flares lead to a significant decline in quality of life. Delays in treatment are not in your best interest at all if you have 4 or more of the other criteria.

Good luck and keep us posted!

Just a follow up to those of you who have mentioned Firbo. In my research, I've learned at (at least in the US) a secondary diagnosis of Fibro or CFS is fairly common. You can have both, but the presence of Fibro or ME does not neccessarily convert a diagnosis of Lupus to MCTD. You can however have a case of Fibro or CFS considered the primary and Lupus as secondary. In my case, my primary diagnosis is primary Spondyloarthropathy (PsA) with secondary Lupus. I hit the criteria for both diseases, but the PsA is more aggressive. Both effect connective tissues (like majorly!!), but that doesn't mean the diagnosis is changed to UDMCTD.

LSS: what you are experiencing is probably overlap syndrome. Some doctors blow it off and relabel it as a "bucket condition" such as MCTD. Press them on the issue, because overlap syndromes are real and the presence of one does not disqualify the other. Also, if the issue is insurance or documentation, sometimes vague diagnosis like UDMCTD can make things worse. You might get denied treatment and medication that you would have normally been granted with a specific diagnosis.

I only saw this so that nobody out there ends up without the proper treatment and guidance. Also remember: ANA tests can swing positive and negative and the ratio/pattern can change over time. A change in your ANA test is not fully indicative of anything and always should be taken in context with your other criteria.

Stay safe and healthy! Hope this helps!

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