Lupus #lupus

[Idontknow20]

Hi. I have ANA 1:160, ENA and DNA negative, I have red cheeks in the evenings that feel like sun burn and mild grade fever in the evenings. My GP hasn't still issued referral to rheumatologist. Question - how long does it take to get to rheumatologist in the UK? Did someone of you had negative ENA, DNA, but still diagnosed with lupus?

[Tonkie]

Hey! I was initially referred as my hand swelled twice the size. Before that they hadn’t been interested in the night sweats, temperature or facial rashes. I’m still not diagnosed with lupus, I’ve been diagnosed with UCTD. Keep a record and pictures of everything! Nothing shows up on my bloods except a weak ANA result once. A lot of GPs want definitive proof before they send you it seems 🙁 good luck with getting the referral - any new symptoms show them and take pics before they disappear!

[Tonkie in reply to Tonkie]

Even now with an extensive list of symptoms - angioedema, reynaulds, Erythromelalgia, tensynovitis, skin blistering and peeling, rashes all over my body, joint swelling, mouth ulcers, butterfly rash, cold/heat sensitivity, stiffness - all of which they have seen and documented, I still don’t meet the criteria for lupus. It can take years to get a diagnosis as they have to see multiple symptoms to be sure it’s that autoimmune disease. Keep diaries of symptoms and keep going to the GP for the referral. But even when you get there, don’t expect a diagnosis - I’ve been so disheartened over the last couple of years and I’ve had to change my expectations. I’m in a ‘watch and wait’ category. There is always private healthcare too which I’m considering at the moment. All the best x

[StriatedCaracara]

I think there is a lot of work minimisation going on at the moment. I kept going to GP with issues, starting in 2019, worsened by covid.

There was talk of referring me in 2019, when I has issues walking and felt like I had flu for most of the summer.

Blood in my urine no infection for months on end - that I think was a symptom that made referral necessary in 2021, as well as my 1:320 speckled ANA and a dozen other symptoms.I could not wait as so much was going wrong.

ENA and anti ds DNA negative - was what excluded me..and was discharged.

Rheumy said I had not a systemic autoimmune disease as walked in the room, pressumably based on these bloods. Not interested in symptoms. Wanted me to shut up. Urine not even tested.

So this is the climate in which GPs are working.

I have since been diagnosed with Undifferentiated Connective Tissue Disorder (UCTD ) ANA positive, ds DNA negative.

Looking at NHS hospital websites I don't see UCTD mentioned, much so guess not many hospitals routinely see Lupus-like UCTD patients.. My local NHS said UCTD was too difficult to diagnosis in their second letter. This is another way of reducing caseloads I presume.

Seeing if hdroxychloroquine works can be key. Goodness knows why GPs can't prescribe given NHS rheumy depts don't help us.

I needed to go private to get help. I don't have insurance, but this was the only option to save my health. It sickens me that getting healthcare for such aweful symptoms has become dependent on peoples' ability to pay. The NHS should be ashamed of itself and recruit better managers, and dispersuade and move staff that set ludicrous standards that don't work.

The system is broken and is only focusing on things it choses too.

For GP surgeries things like Cancer referrals, giving statins, diabetics and asthma follow up. These things score more points than other things.

For rheumatology departments - only caring for patients that only meet research criteria, not those who have symptoms but negative bloods.

In the past people could get diagnosed with Lupus without the positive bloods. The science is largely unknown anyway, this in itself should alert them to the dangers of using a handful tests that can't be relied on. In terms of current tests available, methods, cut offs and realiability can vary too.

Some people get more access to repeated tests than others.

I was told by my GP that tests could not be repeated after being negative first time. Another way of restricting NHS work and reducing costs.

Hoping so much things do improve. Many are not getting timely care.

Including below links to things that helped me.

[StriatedCaracara]

Why HCQ is so important:

healthunlocked.com/lupusuk/...

[StriatedCaracara]

London Lupus Centre where I was able to refer myself.

Different online technologies are used, and different consultants are linked to different NHS hospitals.

healthunlocked.com/lupusuk/...

[StriatedCaracara]

Limitations of current testing. Better testing needed if relying on testing. Linking below to post with link to recent video done by Dr Donald Thomas , author of The Lupus Encyclopedia.

(Doctors should listen to what symptoms we report. Best to only see doctors who do listen and believe. Some chose to ignore whay we say and just consider presenting features. The local NHS rheumatogist I first saw, who discharged me, said photos could not be used. This too did not help.)

healthunlocked.com/lupusuk/...

[StriatedCaracara]

Info on the tests and percentages getting these results.

healthunlocked.com/lupusuk/...

[KayHimm]

You might want to get clarification from your GP. They suspected something in order to run the tests. You should ask for feedback.

The GP may have contacted the rheumatologist who could have said to « watch and wait. ». I know that is a hard position to be in but these illnesses can develop slowly. A rheumatologist can’t necessarily predict or diagnose.

With your low grade fevers and then positive ANA your GP may be suspicious of autoimmune disease. But without specific antibodies and clear cut signs of inflammation, they may want to see what develops.

Do you have joint or muscle pain?

If your GP has noted joint swelling I would be surprised if they don’t send you to the rheumatologist sooner.

Has your GP seen photos of your rash? Do they think you are flushed from fever or is it a different rash? It doesn’t sound like flushing from low fever if it is stinging.

Make an appointment with your GP. You deserve answers about plan even if that plan is to follow you carefully and repeat blood tests.

Best of luck.

Kay

[StriatedCaracara]

One thing I found helped was drawing a diagram. I drew a gingerbread person outline, (sketching in heart, lungs, eyes, nose, mouth etc), then I annoted it with symptoms I was experiencing and when they started.

In the corners there was room to add notes, like symptoms that were occuring together. Maybe any patterns I noticed.

This helps others get a visual impression. I photographed the picture and uploaded in a GP eSubmission. I forwarded the picture ( and took the original with me) when I went for second opinion. The drawing needs to be dated

Also found it worth giving the diagram to other consultants, and taking it with me if I go to A&E ( maybe with a diagram of current symptoms, also dated, so it can be compared). If I go to A&E I need to warn them that ESR does not get raised much but that this happens with some patients.

[Cath24]

A couple of questions you might want to think about:

- is it possible you had an infection like covid before the test, and were perhaps asymptomatic at the time? It can temporarily raise the ANA, often at more modest levels like 1:160.

- covid also reactived EBV in some people. Look into it. Epstein-Barr Virus. This can cause ANA positive. A test can rule this out.

- covid has also caused MCAS in some. Mast Cell Activation syndrome. It can cause so many issues that imitate autoimmune conditions - worth looking into, and some tests can rule it out.

My suggestion is: Request a full blood test to make sure everything is normal. Ask for testing for EBV and MCAS. Maybe even Lyme disease if you think this could be a possibility (it's far more common these days). Rule things out, and then relax - live your life and don't let this fear drag you down. Stress is the worst trigger. Sleep, sleep, sleep. Help your body repair itself. Omega 3 is your best friend to lower inflammation. If you enjoy swimming, it's very therapeutic, and saunas (if you are medically fit to enjoy this) can also help you get rid of toxins. Vitamin D3, K2 and magnesium. If you let your immune system calm down, you can actually bring your ANA down to a low acceptable level if it was merely transient. In my case I have more than triple your ANA and symptoms, but even my case is not irreversible. I hope this is reassuring x

[Idontknow20 in reply to Cath24]

Hi! Thank you so much for such a reassuring response. I plan to have more blood tests done. I've had persistent redness on my face that only fades slightly with some creams. I had COVID seven months ago, but I'm really stressed at the moment. I appreciate your advice—I know I need to manage my anxiety and fear because it's driving me mad. The waiting and not knowing what's going on is incredibly stressful, like I'm not myself anymore. I truly appreciate you sharing your experience and advice. Wishing you all the best, and thank you again!

[Cath24 in reply to Idontknow20]

I can tell you for sure that anything happening to me (and so many other people out there) is a result of covid. Exactly 3 months after I healed, my symptoms started, and they say that this is actually the common pattern seen in many people. There is scientific evidence which proves that covid has lead to activation of all sorts in your body, like if you were predisposed to an autoimmune condition - but don't worry. It doesn't mean we're doomed! It just means that we need to reset our immune system. We don't necessarily have a full blow autoimmune condition, and this is why doctors struggle to diagnose you. Because the fact is that the human body is so complex, and it will just play up with or without an infection. It needs to be playing up so much before they are willing to diagnose you - and that's because once and if you are diagnosed, you often have to take medication like immune suppressants, which of course, should not be taken like candy. It is often better to manage symptoms naturally, unless you tick all the boxes and need a little more help with medication or else, or if there is organ involvement - you might want to also give a urine sample to make sure your kidneys are functioning as they should.

With regards to covid - remember, it's a novel virus - your body had never seen this. Your ancestors had never seen this. But the human body is so strong - you've got this. Many other coronaviruses (like the MERS - Middle East respiratory syndrome coronavirus (MERS-CoV) are proven to cause immune dysfunction - but it's not irreversible. This is key here. Many doctors hesitate to test ANA, because ANA is not well understood yet and is not used to diagnose, just to keep looking (and your ENA panel is reassuringly negative), and a positive ANA test can cause immense anxiety. High stress can also cause immune dysfunction - it's a fact. That's why they only really order it if you either insist and have symptoms, or if they suspect something based on everything.

I wish you all the best too - enjoy your life, keep up with your medical appointments, and rule things out x