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.

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 any help at all. 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 tests that can't be relied on. Test methods, cut offs and realiability vary.

Some people get more access to repeated tests than others.

I was told by my GP 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:

Should be listening 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 to whom I referred said photos could not be used. This too did noy 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