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How often does your dr do your blood tests, especially when you are newly diagnosed? I was a bit surprised my consultant did not repeat my tests on the first follow up appointment, especially since the only conclusive thing I had earlier was the ANA at 1:320 and the other things were all borderline. I thought things should be repeated just to confirm, especially as I don't have other criteria symptoms for lupus. He has diagnosed me with lupus like disease.
 

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Hello Mamoosh
It is a bit surprising especially if your follow up appointment was a few months after the last tests were done. Some docs don't bother with ANA after diagnosis. Other wouls want to repeat the whole lot especially if there might be any doubts about diagnosis
What do you mean about not having any criteria apart from the ANA ?

:)
Clare
 

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Hi Clare

Symptoms are spells of fever (more like feeling extremely hot), transient spaced out feelings (doc couldn't fully explain this although he said he had heard other patients describe similar). Transient stabbing pains in joints. Fatigue. Also have intermittent abdominal symptoms. He said the tummy symptoms were nothing to do with lupus.

Initial bloods showed a positive ANA 1:320, weak positive anti Ro, complement level borderline, lymphocyte count just below normal range on one occasion. Everything else normal.

My doctor is a lupus specialist and I find him v engaging. However he wrote in my clinic letter that I have 'polyarthritis'. My understanding is that this is a much more severe thing than transient stabbing joint pains. I have no swelling/heat in joints etc. I am on plaquenil 400 mg and thought it was helping, not so good today though...

I think you also responded to my thread regarding the sweeping statement about sun avoidance and my holidays...thanks.

Maybe I am still in denial that I have a lupus-like illness. Still I am a bit surprised about a couple of things.

Mamoosh
 

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I was told that ANA isn't tested regularly. I'm interested in different approaches to treatment though so finding out about other people's experiences is really interesting. I'm recently diagnosed, have an ANA of 1:640, don't know anything about my other blood work other than 'inflammation markers are present'. My original hospital referral came after complaining of numb hands last summer, and was to general outpatients. After three visits to an outpatients consultant (who did my first ANA, but then didn't believe the result and repeated it because he thought it was a false positive due to a chest infection, but it came back the same) I then had a nerve conduction study which didn't show anything, and was told it was probably something auto immune and referred to a rheumatologist. While waiting for my rheumatologist appointment I started getting significant joint pains in feet mostly, which have progressively worstened. First rheumatology visit was information gathering and more blood tests. Second visit got my diagnosis and put on 200mg Plaquenil daily. Repeat appointment in October.

I decided to switch GP as I didn't think I'd get the care I need from my existing one. My new GP asked for a full blood panel, taken today, results next week. I'll let you know how I get on. Not sure what the rheumy follow up will be like.
 

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Every 6 months is pretty routine for me, as I'm not on any medication that requires more frequent testing like Imuran, methotrexate or Cellcept (etc.)
My doctor(s) have repeated the ANA test a few times as well as the other autoimmune antibodies, spread out over a few years but have stopped now as it is pretty much a useless test after certain diagnosis. In your case, I can understand that you may want repeat testing since things were borderline abnormal.

This is certainly something you can ask your doctor about at your next appointment; but it is also important to realize that symptoms should trump blood test results when it comes to treatment decisions, unless the bloods or other testing done indicates the diagnostic label needs to change (& also suggests the treatment should change).
 

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For me it is every 6 months unless my doctor thinks I am in a flare then he may do some repeat testing.

I do think if your numbers were borderline then they should have been repeated yet my Rheumy, in the beginning wanted to wait 3 full months before repeating any testing.

I wish you luck moving ahead and keep us posted.:wink2:
 

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He may want some more time to pass before doing a retest. My doctor takes blood every 6 months unless I have new symptoms that might show up in the blood. I have not had a positive in my blood ever so am not sure about how often they test if you do have a positive come back.

You might just ask your doctor how often you will need blood tests just as an informational thing for you. All doctors do things differently, it is what they feel comfortable with. It would not surprise me if you develope some new symptoms that you are not headed for the lab again.

I hope you feel better soon.
 
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