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ad397 profile image
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Hello. I'm new here, after almost 2 years I finally saw Rheumatologist today. My ANA test is negative, but the doctor says I have all signs of Lupus. Raised CRP and ESR levels, hair loss, skin rashes, joint pain, fatigue etc. Have had cortsteroid injection today with a review in a few months to start hydroxychloroquine if needed. Has anyone had similar experience? Thank you 🙂

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miccika1 profile image
miccika1

It is possible, but of course much rarer than having positive ANA. It is diagnosed without positive ANA only after you have eliminated other conditions with same symptoms. There are plenty of other conditions with the symptoms you described. What did you receive the injection for? In the joint, for joint pain? Usually people get a taper of corticosteroids in a tablet form to see if that helps. Then hydroxychloroquine is the first long term drug to try if it helps. What are they going to review in a few months? Effect of the injection?

Also make sure you are tested for anti-Ro/SSA or antiphospholipid antibodies. Those could be positive wihout ANA being positive and could confirm your lupus diagnosis.

ad397 profile image
ad397 in reply to miccika1

Thank you so much for the reply! I had the injection in the muscle in my bottom. They are going to review if the injection worked and then go from there.

I have seen a neurologist, had MRI, nerve conduction studies, I've had a sleep test, all of which showed nothing concerning. My RA blood test was 20, which I was told is negative. Ruled out chrons, sjorens etc. It seemed the only thing left was lupus but they won't diagnose without the positive ANA.

Thank you for the advice regarding blood tests, I haven't had those ones so il mention it.

Is it normal for the injection to make you very tired at first? I slept for 16 hours straight that night and following day and my whole body feels like I have just run a marathon!

miccika1 profile image
miccika1 in reply to ad397

I never had a steroid injection so i wouldn't know. I always takes tablets

katidid profile image
katidid

ANA is only one criteria and it can change. It’s actually not uncommon for it to go in and out of positive, especially if the ratio is low.

Diagnosing Lupus is complicated and they do use a large set of criteria of which you have to meet a specific number. And even some of those symptoms will change over time! As many of us can testify, it takes awhile and can be muddy process.

What I have learned having Lupus and another autoimmune illness is “distinguishing” characteristics and making sure that before you get the Lupus stamp, if you will, you’ve been assessed for other conditions that match many clinical manifestations you listed.

I’m not sure if you’ve seen a few Rheumatologists, but it’s good to get different takes on it to make sure you’ve be comprehensively looked over, especially with the symptoms you’ve described.

You’ll find a lot of us on here that have multiple autoimmune issues and some “cross-over” syndromes. The faster you can ruling anything in or out, the better off you’ll be.

Curious, what does you skin rash look like? Do you keep pics of it?

ad397 profile image
ad397 in reply to katidid

Hello thank you for the reply. I have been assessed for many other conditions,

I have seen a neurologist, had MRI, nerve conduction studies, I've had a sleep test, all of which showed nothing concerning. My RA blood test was 20, which I was told is negative. Ruled out chrons, sjorens etc. It seemed the only thing left was lupus but they won't diagnose without the positive ANA.

I have a couple of pictures of the rash. It first came on after I had sat in my garden for about 20 minutes in the sun. I have never seen or felt anything like it. It reminds me a bit like hives. Often it appears in patches rather than an all over rash. Mostly on my arms, neck/top of back and chest. I did have it once on my legs and that very much felt like tingling sensation.

I guess it is a minefield and one that I just need to keep persevering with. I'm concerned about my work, I am a youth and community worker, so out and about a lot but the pain is often unbearable.

Is there anything in particular I should be looking out for in terms of the distinguishing characteristics you mention?

Thank you again

nanleighh profile image
nanleighh

Hi, Yes. I do like Rheumatologists that take a more conservative approach and don’t start by throwing multiple drugs at you. My experience was similar. I had symptoms for decades before my diagnosis but the Rheumatologists here will not diagnose without a positive ANA. I had tapering prednisone to begin with. When the symptoms didn’t resolve, I started on hydroxychloroquine. It took a good 8 months for my symptoms to go away, without going into my life’s story, it was a miracle drug for me. It took away my joint and muscle pain. It did not help my fatigue much or the rash on my face and neck. But it made my life livable again. I welcome you to this forum and wish you the best of luck with your journey ❤️🍀

ad397 profile image
ad397

Hello, thank you so much for the reply.

So were you given any type of diagnosis in the mean time? Or any type of general name given to what you were experiencing?

Thank you 🙂

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