LUPUS UK
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New and as yet undiagnosed

Hi folks, I’m new here. I have been told I have anti-ro antibodies and I’m seeing a rheumatologist for the first time next week.

My symptoms fit completely with pernicious anemia rather than lupus but anti-ro is not associated with PA. I’m on a therapeutic trial of B12 which is helping with some of the symptoms. (No B12 problem found in blood work but that isn’t unusual)

I don’t have a rash although I do get problems in very hot sunlight, I’ve always put it down to being prickly heat. I have Raynauds syndrome but that was diagnosed over 20 years ago. I don’t have joint pain. Could it be lupus? I don’t have the dry eyes problem either. (Sjögren)

I saw someone for peripheral neuropathy testing today (all ok) and he said if my symptoms don’t tally with the result the rheumatologist will disregard the blood test results. Has anyone else been in this situation?

I’ve had to battle so hard to get this far though, GP wanted to just call it chronic fatigue and leave it at that. The most debilitating symptoms are the chronic fatigue and brain fog. I’m signed off work because I have to nap at least once a day to function.

Any thoughts? Anything I should ask the rheumatologist?

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I’ve also just read that hair loss is common in Lupus, I had telogen effluvium as a teen and several relapses. (Diffuse thinning) it’s always been put down to anemia. I take extra iron for it.

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Hi AmyG6500,

Welcome to the LUPUS UK community forum. I hope that you find this a helpful place for information and support.

Anti-Ro antibodies are not specific to lupus, appearing in around 20% to 60% of people with SLE (depending on the patient population and laboratory method used to detect the antibodies. They tend to be more commonly associated with Sjogren's syndrome where they are seen in anywhere from 75% to 95% of patients. They can also appear in a number of other associated diseases such as rheumatoid arthritis, scleroderma and polymyositis.

Do you know if you tested positive for any other autoantibodies? The two which are most important for lupus are ANA and anti-dsDNA. You can read more about these, along with other information and advice for getting a diagnosis of lupus in our blog article here - lupusuk.org.uk/getting-diag...

I'm afraid we couldn't say whether you may have lupus or something else because we are not medically qualified and the symptoms you describe are not necessarily exclusive to one condition. Hopefully the rheumatologist will be able to provide some answers and start you on some treatment to help alleviate your symptoms. If you'd like any tips on preparing for your appointment, you may wish to read our blog article here - lupusuk.org.uk/getting-the-...

We also have a couple of blog articles about fatigue and brain fog which you may find helpful;

lupusuk.org.uk/managing-fat...

lupusuk.org.uk/coping-with-...

Are your employers aware that you are being investigated for possible lupus? Have they discussed making any adjustments to help you manage better in your role? We have a couple of booklets about lupus and employment which you may find helpful. You can read/download them at lupusuk.org.uk/working-with... or if you need physical copies posted to you, please just send me a private message or email paul@lupusuk.org.uk with your name and address.

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Thank-you Paul, I have negative ANCA and double stranded DNA and CENP negative. Are those the same as the tests you mentioned? I don't have the symptoms of Sjogrens. I have downloaded the information pack.

I am self-employed but currently working very reduced hours and claiming ESA.

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Double-stranded DNA another name for anti-dsDNA antibodies. This is a highly specific test for lupus but is only positive in around 60% of people with SLE so a negative result doesn't rule it out completely.

ANCA is a test for vasculitis. You can read more about this at vasculitis.org.uk/about-vas...

I believe that CENP is a test used for scleroderma, but it is not one that I am familiar with I'm afraid.

Do you know if you had an antinuclear antibody (ANA) test?

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Only ENA is mentioned in the letter. I’ll ask about ANA at the rheumatology appointment next week.

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Is ENA the same as ANA? It was positive with anti-ro

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An ENA panel is a more-specific test than ANA looking for autoantibodies found in conditions similar to lupus.

The ANA test is the main screening test for autoantibodies and includes anti-dsDNA antibodies and the various anti-ENA antibodies.

A positive ANA is seen in around 95-98% of people with lupus and is one of the diagnostic criteria. It is not exclusive to lupus though, so only provides supporting evidence for a diagnosis and isn't definitive.

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Thanks! I expect I’ll be sent for an ANA test then. I haven’t had it yet.

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I have battled long and hard with the doctors at my GP surgery to get this far. So I'm reading up as much as possible so I don't miss anything crucial when I see the Rheumatologist next week.

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I'd say that often the most important part of a consultation for me is not specific to lupus patients. But because we are typically complex cases, perhaps it *is* a little more important for us. i.e. checking with the medic at the end of the appointment exactly what the plan for future management is - who is the lead clinician from now on? where will any report from this review go and how can you access it? who is responsible for chasing up any proposed investigations etc? and what do you do if nothing seems to be happening?! Good luck anyhow x

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How high are your levels of anti-Ro?. I have less symptoms than you and once they did the test they def took them into consideration. Anything over 1/640 is too high to ignore i'm told. This is my level but benchmark could be lower. I'm being followed every 3 months.. well i was until my great dermatoligist retired and now the waiting list is pretty bad! Should've been seen in autumn!

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Thanks, I’ll see if the letter gives the figure. Will look tomorrow now.

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The letter says: ENA was positive at 1.8 and anti-ro was high at 43 U/MI

Is that even the same measuring system as your 1/640?

All I have is this letter, I haven’t been able to discuss it with a doctor yet.

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Hi Amy. I’m concerned that the absence of Sicca symptoms might exclude you from a Sjögren’s diagnosis. Have you asked an optician (most high street opticians can run this test) to do a test to show your tear break up speed? Some people, such as me, find dry eyes really problematic and yet, when tested their dryness hasn’t caused damage to the eye surface - even when the Schirmers shows positive. Others feel there is little problem with their eyes but tear break up can still be very poor and scarring to eye surface has already occurred.

As I said on another post - some with Sjögren’s present first with kidney or neurological problems. For me my mouth isn’t very dry at all but my nasal passages and digestive tract and eyes all are. It’s a very complex disease, and similarly to Lupus can present in many different ways. Increasingly doctors are recognising that fatigue is the most dominating symptom for the majority of sufferers even more than Sicca.

So if you haven’t already checked it is well worth getting your tear break up checked before you see the rheumatologist because they can only check using the very basic (and unpleasant) Schirmer’s test - which really isn’t fit for purpose so my optician and ophthalmologist both tell me.

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Thanks for this. I’ll call the optician and ask if they can do it. I had an eye test just under a year ago because my sight has been problematic. The prescription was the same though. He said it was most likely the fatigue affecting my eyes. Although he did tell me that what I’d always thought was a lazy eye was a problem with the eye sending the messages back to the brain. I can’t read at all with my left eye, but this has been from birth.

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Oh okay -but did he do a tear break up test to measure how well your tears are crossing the eye surface when you blink? Or check your mybomean gland function? These are very important tests for Sjögren’s because it’s not just about how many tears or how much saliva we produce but also about the quality.

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No he didn’t, I rang them today and it’s not a test they do. I’ve found another optician to do the tear break up test and I have an appointment on Monday, the day before rheumatology.

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Hi Twitchytoes I had the tear break up test and it’s all normal. So we’ll see what the rheumatologist says tomorrow.

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Well that makes Sjögren’s much less likely then - but maybe not impossible. Let us know please and good luck.

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Will do! Thanks so much. X

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AmyG6500,

Welcome. It is difficult getting a definitive diagnosis for many of us with autoimmune disease.

I was diagnosed sjogrens syndrome, ?lupus. I have anti ro positive, plus other definitive blood, and other test, results.

Battling through terminology, medics opinions, changes of opinions, and complex, ever changing symptoms, can be a challenge. Already, you are on it, listening to your body, reporting on symptoms, and making good enquiries.. HU offers much support and advice from fellow sufferers

I was also advised (by a research doctor), to read about sjogrens, I do, and to join BSSA British Sjogrens Society Association.... best decision, for me, I learned a lot. I have not only gained knowledge of Sjogrens, I have gained friends, support, and can contact BSSA helpline, if I need advice or support, from the health line staff.

Google BSSA, see what you think, and good luck.

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Thank you, I will. I have also joined the Pernicious Aneamia society. They have helped me a lot too. Although I still don’t know if I have PA. The blood tests are unreliable. A therapeutic trial of B12 has helped some symptoms but not others. Maybe I have both! Auto-immune conditions are so very complicated aren’t they. I had no idea before I got ill and had to fight for answers.

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Bless you. All will be revealed, as you continue searching for answers.

I have learned a lot, about myself, and about other people. Becoming ill, and facing challenges, has given me the opportunity to dig deep within.

I find, the illness journey, brings me to my most authentic self. Illness definitely stripped away stuff I previously considered important in life. I have become my own best friend. I now know myself, inside and out.

Good luck.

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