I think I have Lupus but not diagnosed yet

[Zephyrspurple]

hello everyone.

I have always been a really active person. I consider myself athletic and constantly keep myself busy.

But have been struggling with fatigue for a few years and put this down to IBS and getting older (late 30’s) but despite my IBS being well controlled now, recently my symptoms have become more noticeable. Some days I wake up and feel like I haven’t slept for days, like I’ve been hit by a train.

More recently I have also had joint pain. Sometimes more of an ache and other times a sharp seering pain. This is usually in the knuckles of my fingers and wrists and right knee. Sometimes I get redness in these areas too. And I generally feel stiff, like I’ve got cotton wool in my joints. My limbs feel tired and heavy. I described it to my doctor as I feel aged before my time, usually these symptoms are in the morning. This alerted me to see a doctor as my mother has rheumatoid arthritis and wanted to check myself out.

I also find I get what I think is a malar rash after I get stressed or tired. My cheeks feel hot and they go bright red but I wouldn’t call it a rash, more of a blush. It doesn’t always go over the bridge of my nose but some days it does. I get dizzy easily, I get more motion sick than I used to, more headaches, and I also have Raynauds when I’m stressed or cold. I’ve had a fever during one of these extreme tiredness days, but this is not a regular thing. I do get intermittent night sweats but these are quite rare.

Some days I am completely normal, others I have one or two symptoms, and some days all the symptoms. It’s completely random but I do find stress or doing too much really brings on the symptoms. Some days my symptoms are for a few hours, other days it all day or for several days

When I saw my doctor they did some basic haematology and biochemistry tests which were all normal, as were my hand X-rays. So she said I was normal and felt Rheumatoid arthritis was unlikely. Thankfully I have been referred to a rheumatologist regardless but have several months to wait for this appointment.

I have medical background and have a diagnostic mind, so I felt unsatisfied with the lack of clear cut results and with the feeling of not having an answer so I got some more in depth bloods done abroad. Most of this was normal except

ANA 1:320 and Anti sm u1-RNP weak positive.

I know ANA is not very sensitive or specific. My ESR and CRP were normal. So I’m struggling to know whether it’s still possible for me to have lupus.

But the symptoms of lupus seem to marry up with what I experience so well. Except I don’t have photosensitivity, hair loss, ulcers or any renal issues.

From what I have read diagnosis can be slow and frustrating firstly because everyone’s symptoms vary and there’s not one clear diagnostic test, but I so badly want to understand what’s going on so I can manage my life and for people around me to understand why I can’t get out of bed some days. How did everyone cope in the lead up to their diagnosis?

[Lupeyfrou22]

Has your antiDSNA been checked?

[Zephyrspurple in reply to Lupeyfrou22]

Yes. AntidsDNA was negative too

[Love2fish2]

I’m sorry that you’re feeling bad and not getting the answers you need to know what’s wrong. I suffered for over 17 years before being diagnosed with Lupus. My Ana was negative for a very long time. I was diagnosed with Fibromyalgia which mimics a lot of the same symptoms. I was in pain every day for so many years. I was finally diagnosed in 2012 with Lupus and have Sjrogens, RA and a host of other things. I’m blessed not to have any problems with my organs, hair loss etc. I hope you get answers soon.🤗🤗

[Zephyrspurple in reply to Love2fish2]

Oh gosh! What a journey you’ve been on. I hope you’re better now that you’ve been diagnosed and have the help and treatment you need ❤️🙏🏻

[Hoofprints]

Have your complement blood levels been tested ( C1Q, C1, C2 and especially C3and C4)?

Also a test for anti-C1q antibody?

I had all the symptoms of lupus and autoimmunity for years, but was brushed off because of so-called 'normal' blood tests. My CRP and ESR have never been elevated and I was negative for the usual lupus blood markers

However my C3 and C4 were slightly below the normal range for some time, although this was dismissed as being of no significance (you can't win!!). And when I was tested for anti-C1q antibody, I was found to be extremely positive and far outside with the normal range.

This led to me being diagnosed with urticarial vasculitis syndrome, which is a lupus-like illness and form of vasculitis.

You don't say whether you suffer with any other types of rash, but the type of facial rash you describe is one I have developed over the last 24 months.

The point is that you know your body best, and not everyone makes the acute phase proteins typical of inflammation. Keep chasing answers and blood tests - and good luck 🍀

[Zephyrspurple in reply to Hoofprints]

Thank you for your advice. I hope you are okay

[Hoofprints in reply to Zephyrspurple]

Thank you. I'm being treated now, which is the main thing (with Hydroxychloroqine and low dose steroids). There's no treatment for M.E. or fibromyalgia (if you discount pain relief, which is not truly treatment). Good luck and do let us know in the forum how you get on.

[StriatedCaracara]

The 2019 EULAR/ ACR classification criteria intended for research but it seems sometimes used for diagnose, after using positive ANA as an entry criterion, requires a score of 10, counting the highest scoring item on the left side and on the right side of this table.

(I'm not sure what is meant by anti sm uRNP whether it is anti sm and anti uRNP together.

but Anti Smith scores the same as Anti dsDNA. I believe Anti RNP gives additional info too, suggesting maybe a different pattern of disease.

Dr Thomas' Lupus Encyclopedia has information on these antibodies.

It is thought SLE may have different sub-groups).

ncbi.nlm.nih.gov/core/lw/2....