Confused: Hi. I am confused and any replies would... - LUPUS UK

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maybehope profile image
8 Replies

Hi. I am confused and any replies would be helpful. I have been diagnosed with SLE and have started Hydroxy. My ANA was positive Titre 1: 160 and DS DNA >200iu/ml. I have just had a blood test for ENA and it was negative. Can I have SLE with a negative ENA result? So confused!!!!!!!

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maybehope
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kazp profile image
kazp

Any type of lupus can result in any results as we all suffer differently.

My bloods are notorious for showing some stuff that doesn't tally at all with how i am feel etc.

Sit down with a cuppa and some biscuits and breathe slowly. Take care. X

maybehope profile image
maybehope in reply tokazp

I thought ENA was to find out what type of auto immune and how aggressive it was so to come back negative when I have been feeling dreadful is a shock!

Need more than a cuppa the way I am feeling :(

Paul_Howard profile image
Paul_HowardPartnerLUPUS UK in reply tomaybehope

An ENA panel is often used to investigate what type of autoimmune condition a person may have, as you suggest. Negative results do not necessarily suggest you don't have SLE or another autoimmune condition, but could mean they have not yet developed those particular types of autoantibodies.

maybehope profile image
maybehope in reply toPaul_Howard

Thank you Paul

Carole-J profile image
Carole-J

Hi I was a patient of Professor Hughes before he retired. He told me that you can have Lupus and it may not show in blood tests. You need to keep trying to get answers, look at other hospitals or doctors if you don't keep pushing believe me no one else will, I have been doing it for many years. A lot of diagnostic tests need to be looked at again some of them are very outdated and doctors need to listen to their patients more. Good luck hope you get some answers regards Carole J

maybehope profile image
maybehope in reply toCarole-J

Thank you Carole-j. I have had a long history of being unwell and got my records from the doctor to take to the consultant. He diagnosed me right away with SLE after looking at my bloods etc but then ordered the ENA after which has now come back negative. Everything else is positive but reading other blogs on here I thought it could not be SLE if the ENA was negative. As a newbie it all seems so confusing. :)

Natura profile image
Natura

Hi maybe...i tested positive and then negative as well. But, i still have symptoms. I believe even if negative, you can still have. I cant sit in the sun too long without feeling unwell. Trust yourself. Drs can be wrong.

maybehope profile image
maybehope in reply toNatura

Thank you Natura. I will keep going but it is soo hard some days :)

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