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LUPUS UK
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Could it still be SLE???

Hi all in need of some advice from people who understand the frustration of having symptoms that are shrugged off or made not important by gp's who make you feel like you are going mad or imagining symptoms cos you could be 'stressed'. Grrr sorry rant over. I'll get to the point now....I have IBD and have been on azathioprine for approximately 7 years, does anyone know if this could affect blood test results (ANA etc) as I have many symptoms of lupus but negative blood test????

Any help appreciated

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Hi there. So, you take Aza for IBD? I've not heard of that before. I'm sure that it could keep your antibody tests normal. Not all auto-immune conditions cause positive antibodies - a rheumatologist wiukd take the whole picture into account.

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Thank you for taking time to reply. I have been back and forth to gp for months but they only ever look at the symptom that is troublesome on the day instead of the bigger picture. This is extremely frustrating and the impact the symptoms are having on my life are huge. I have not been able to work for last 4 weeks due to extreme fatigue but still no referal to rheumatologist!!!!!

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Can take many years to join up the dots!

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I did not find literature that shows that Aza changes your antibodies. However Azathioprine lowers the numbers of white blood cells in in your blood so your normal blood panel can be different because of it.

You should go to a rheumatologist. A GP cannot diagnose an AI condition.

Because you have IBD, also an AI, your chances are bit higher you also have another AI like AS/Bechterews.

Good luck.

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Thank you. I am continuing my battle to get a referal and I will keep on and on until someone finally listens!!

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You should and you can💪🏼💪🏼💪🏼

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Hi, I i was dx about 20 years ago.i have only had one blood result which was positive at the time I just kept a diary and refereed myself to the Louise Coote unit in london where I dx not just because of the blood test it was based on symptoms etc. So really I don’t think it matters to much on bloods which dr. Focus and make there judgements. On this. While we as patients suffer daily with a wide range of symptoms I have ibd. And w used to be in Azathioprine but over time was changed on to methotrexate. I hope you find your answers it is frustrating to say the least stay strong 😀

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You could show your GP the SLEDAI-2k form (http://www.sledai-2k.com/sledai2k.pdf) - used for monitoring SLE - and Table 5 of the sole UK guideline for SLE (https://academic.oup.com/rheumatology/article/57/1/e1/4318863) to give him the bigger picture. My GP thought of SLE as joint pain only...🤡

SLE can be ANA-negative, though its uncommon. The current diagnostic assessment method of 4 from 11 criteria (in that Table 5) needs one from the SEVEN immunology tests.

Do keep a diary - the Americans are proposing a new way of diagnosis including all symptoms EVER had, not just on the day of the consultation !

It's a struggle, keep at it and good luck! 💪👏 xxx

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The ANA is considered more of a screening test. What are your symptoms? Is it that the GP is shrugging them off or that he sees them as part of your IBD? It certainly sounds as if you are not feeling well and that your doctor has not accounted for your symptoms. Hope you get answers soon.

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I have ulcerative colitis sjogrens ank spondylitis and god knows what else.

My bloods are basically ignored now as I am consistently seronegative despite the most debilitating symptoms. So I'm in hospital with horrific colitis attack. My inflammatory markers were worse when I was less sick.

My sjogrens is horrific yet I'm negative on all bloods including ANA. Only a lip biopsy and disappearing nerves have verified it.

The things I have heard about these illnesses from doctors is hysterical.

Basically you will need to become very au fait with your illnesses and limitations of certain tests and let them know you know as such. They completely accept at my hospital that my bloods do not reflect things particularly the ibd. It was a scan and colonoscopy which confirmed the true horror of it.

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And they most definitely do use Aza for ibd particularly in America. It is used often as a combination with a biologic like remicade / infliximab.

My view is it prob matters much more how you feel and what your symptoms are as opposed to any antibodies?

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Hi Whiteyswifey,

Welcome to the LUPUS UK HealthUnlocked Community! We offer a free information pack which you can download or request at lupusuk.org.uk/request-info...

I am sorry to hear that you feel your GP is dismissive of your symptoms, have you tried getting a referral for a second opinion? If you would like information on how to change GP’s, click here lupusuk.org.uk/getting-the-...

I have had a look in The Lupus Encyclopedia for information on azathioprine affecting blood test results but have had no luck. The encyclopedia does mention that azathioprine can cause a low platelet count and low red blood cells but does not state the drug can alter blood results.

An ANA test is used to determine whether or not someone has an autoimmune disorder, it is not sufficient in diagnosing lupus. To find out what criteria and tests are needed to make a diagnosis of lupus, read our blog article at lupusuk.org.uk/getting-diag...

To read our blog article on ‘managing fatigue’, click here lupusuk.org.uk/managing-fat...

Please keep us updated, wishing you all the best.

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Thank you for all your replies. I believe my GP fails to see that I could have another AI disease and as I have suffered from fatigue for many years has put this down to my IBD. The last appointment I had where I tried hard to explain my symptoms as a whole rather than individually which is how they treat them I was basically told it was psychological!!! I know my body and I know when something is not right. My latest bloods showed low iron and low vitamin D for which I now have more medication. All I want is a referal to a rheumatologist who will look at the whole picture. Instead I get given more blood tests and 'let's give this a try'. I wonder how quickly it would change if it was their quality of life that was affected!!

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