LUPUS UK
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Negative ANA - could it still be Lupus?

Hello,

I’ve been referred to rheumatology at Huddersfield for suspected Lupus but have to wait until 30th April for my appointment. My blood came back ANA negative for Lupus but enabled a diagnosis of Hashimoto’s and my GP has put me on Levthyroxine. Despite the negative ANA - he still believes that there is something else going on as my symptoms don’t all fit with Hashimoto. I’m so worried about it all and what it means for me and my work. I’m in a lot of pain right now and I’m not coping well at all.

I wonder if this sounds like Lupus to everyone - malar rash for several weeks now which gets worse when I’m outside, scalp and back of neck psoriasis, rashes across my chest, history of UTIs, depression, IBS and autoimmune thrombocytopenia, recurrent severe debilitating pain in the lower abdomen and kidneys, insomnia, headaches, dizziness, swelling and moderate pain in my fingers, wrists, elbows and left knee, shooting pains and tingling, sudden and unexpected swelling of my abdomen, recurrent flu-like illness with no cold symptoms just a high temperature and muscle/ joint pains, and I am exhausted all the time - falling asleep in meetings and in the evenings for short periods but then awake all night.

I’ve had these symptoms on and off for 15 years, the docs insisted it was gastro or gynae and I’ve had cameras in every hole and have been scanned to death. Just IBS - change your diet is the answer every time. Haematology saw me for a couple of years but then discharged me after my platelets mysteriously returned to normal after I had my daughter. It’s only with the appearance of the malar rash in January that the GP has started to think about a different diagnosis.

I’m really worried that the hospital will look at my negative ANA and just dismiss me again. I just want to understand what’s happening to me. Any advice is welcome.

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I think the possibility of ANA negative Lupus is around 5%

However I’ve had all your symptoms and longstanding Hashimoto’s for much of my life. I was diagnosed with seronegative RA in 2011. My RA symptoms remitted with the drugs but things became bad have remained very MS like. But I relocated and the new rheum was adamant that there’s no such thing as seronegative Lupus. He disregarded the fact that I was still on a low dose of Prednisolone when tested and my ANA and ENA panel were negative.

I moved again and by this time my ANA showed significantly positive and I had a lip biopsy for Sjögren’s - bingo 100% positive. Sjögren’s is the most under diagnosed of all rheumatic diseases but 30% of sufferers are seronegative - also for RA. So if you have one form of autoimmunity as you do then you need to keep pushing and talk to your GP about other rheumatic diseases which are more likely to be seronegative.

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Hi Twitchytoes, thank you for reaching out. I have read many of you posts over the last few days and you have a lot of knowledge on the subject. From what you say, it sounds like I need to do a lot of research if I’m going to have any chance of getting to the bottom of things. I’ve always been passive and accepting when it comes to doctors, but perhaps I need to stand up for myself a bit more. I’ll definitely read up on Sjorgens and RA. My new GP doesn’t know a lot about auto-immune diseases but he’s being very pro-active and we’re learning together. So far we’ve got further than all the other GPS in the practice. I’m heartened by what you’ve told me because whilst it does seem like a long road ahead, so many of you have walked it before me.

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Does this mean ANA should be tested at regular intervals to definitively rule out Lupus? I have negative ANA too but am a walking Lupus case. When I have any energy to walk anyway.

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Hi Icebeaver!

Your symptoms sound so similar to mine, it does sound like something else is going on to me. It’s good that they’re investigating it more now and at least you’re back in the system.

I’m in exactly the same boat, I have consistently raised ESR but all lupus tests have come back negative so far. My rheumatologist said that she didn’t believe in seronegative Lupus, but seeing me had changed her mind! So at the moment I’m being treated for Lupus.

I’m actually seeing my rheumy tomorrow and I’m quite nervous. It’s been over a year now of investigations and I feel no closer to a solid diagnosis. From what I’ve seen and heard from other people it can take many years to even get close to being diagnosed. Autoimmune conditions are so broad and varied it can take so long for them to pinpoint what it is.

Hope this helps a little and just remember you’re not alone. Xx

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Hi Makimon, thank you very much for getting in touch. I hadn’t thought of it as being back in the system, but you are absolutely right. If I’m in the right part of the system this time around then that’s a huge positive. You seem to have a good relationship with your rheumatologist, even if she doesn’t have all the answers you are looking for yet. That gives me some hope, too.

I hope everything goes well for you tomorrow.

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PS meant to say that my ESR/PV and CRP are consistently between raised and soaring. My rheum says this is a Sjögren’s thing due to very viscose blood rather than inflammation of Lupus or RA. .

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My advice is for you both to keep an open mind and try not to focus too much specifically on Lupus. UCTD, MCTD, Vasculitis and RA and Sjögren’s can all cause facial rashes and many other coinciding symptoms. As my first rheum said, “we should treat the person not their blood” and also he used to explain that the names we give rheumatic diseases were only coined by a bunch of rheumatologists and actually it’s really important not to get too hung up on the name we give ours. “Things can change” he used to tell me!

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That’s a very good point, Twitchytoes. It doesn’t matter what the disease is called - only that the symptoms are being managed. I think I was getting hung up on giving my illness a name because I’ve spent so many years being bounced around different specialists and not getting any treatment. If rheumatology is finally the right part of the NHS for me then it doesn’t matter what tag they come up with because, hopefully, I can start to move forward with managing all the symptoms.

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My biggest fear is that I’m still in the wrong place, though. Perhaps I worry about that too much.

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Hi Icebeaver,

It sounds like you're in the right place with Rheumatology. When I got sent there after Neurology last year, it still took me a couple appointments to really understand that the Rheumatologist did actually believe me.

You have a terrible list of symptoms. After being shuffled through depts, particularly ones that just say you need to change your diet (I suspect without even knowing what your diet is, mind!), it's no doubt you'd have reservations and concerns about what's next and getting a name for what this actually is.

With hope some sense of it will be made for you very soon. This disease is a long, hard slog. I've had cancer and now this and I have to say that from a diagnosis and treatment perspective, cancer was easier.

All very best,

Panda x

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Hi Panda, thanks for your words of encouragement. It’s really hard to stay positive at times. The forum has been very helpful to me. You are all very supportive of each other and very accepting of new people, which is lovely.

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Hello

I have been labelled as most likely ANA Negative lupus for three years now and treated accordingly. I was referred to my Consultant Rheumatologist four years ago with very similar symptoms to yours. I was investigated fully like you. My ANA has been persistently negative but all other diagnoses have now been ruled out. My symptoms therefore best fit Lupus/SLE. The simplest way to think about this is are you on appropriate treatment of your symptoms. My current treatments include steroids, Cellcept, Hydroxychloriquine , Calcium medications for bone protection, and various analgesics. My Consultant continues to test my ANA periodically with severe flares.

Education from approved clinical sites, Lupus UK and Health Unlocked have provided education and support to help me understand and learn that sometimes we all don’t tick all the boxes. If it looks like a duck, quacks like a duck then it’s a duck!

In meantime keep good contact with your GP to ensure daily symptoms like pain, skin care, and general well-being are well controlled. Sounds like your GP was on the ball to suggest a possible Lupus diagnosis and refer you on appropriately.

Wishing you good health hope you don’t have to wait too long. Take care

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Hi kerrclan, thank you for sharing your story. I especially liked the duck analogy. I’m learning a lot from all the websites and useful advice on the forum. I certainly feel like a duck, so I guess we’ll need to see if the Rheumatologist thinks I quack like one!

And thank you for making me smile, it’s been a while!

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Hi Icebeaver

You are so welcome. It’s easy to forget to laugh and feel normal! I am confident in five years time clinical research will prove the number of patients with ANA Negative Lupus will increase. We are no less a Patient than those with positive ANA.

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Hi IceB

I have many of your symptoms and am ANA negative but no-one will diagnose Lupus even though my sister has it. I had my thyroid removed years ago due to a goitre (nice when you’re only 30) so have been on thyroxine for ages.

Current diagnosis is ME, fibromyalgia and migraines.

I think you are incredibly lucky to have found someone who is taking the possibility of lupus seriously rather than being fobbed off as many of us because the ‘bloods’ don’t fit.

It means you’ll be getting the right treatment.

Good luck x

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