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Hi everyone,

Just wanted to ask for everyone's views! Do any of u think that blood test results really reflect disease activity or how we feel as there have been times when I feel like terrible or like a flare but my dsDNA is negative with a slightly increased ESR but because my dsDNA is negative, my rheumatologist do not think that it is related to my disease. Just wonder if anyone of you have similar experiences?
 

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I have felt horrible, only to have mostly normal blood work, other times I've felt great and had terrible blood work/urinalysis results. My Dr. seems concerned with how I feel not just test results though, I feel very blessed in that reguard. She believes me without having to have "bloodwork" to back it up. I am very greatful for that.
 

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Hello there :)

I think a lot of people here have found that blood test results don't always agree and that they often haven't "caught up" with their symptoms.

In my case my bloods have reflected disease activity but I have also had very bad patches where there weren't any bloods taken right at that time.
My rheumy has actually given me a separate blood test request form so that if I have another "emergency" I can go in and get the bloods done straight away before an increase of prednisolone influences them again.

I also don't have any positive ana nor positive anti ds dsna so my bloods have always been rather tricky and indeed initially delayed diagnosis for me.

Katharine
 

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Hi kysing,

To rely on blood tests and ignore signs and symptoms of an obvious flare is something some doctors will do :rolleyes: For quite a lot of us here blood tests do not reflect how we are. It does depend on your symptoms though, if they are mainly fatigue and what I call the 'normal' aches and pain and muscle soreness we get 99% of the time............. then I don't class that as a flare, it's just the disease basis if you like, it's just us on a seemingly typical day.

Many times my bloods have come back fine and I am obviously very ill, other times they have come back abnormal and I feel fine :hehe: So who knows, is it the timing or is it that it's hard to catch our ever changing immune system in action during pathology.

love
Lily
 

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I only have positive ANA and anti-cardiolipins (& low c4 complement). Never once had a high sed rate or CRP - & I have cursed more than a few doctors I've seen who carte blanche declare that my "lupus is not active because your sed rate is normal". This while I've been leaking protein (small amounts) or my c4 is low AND I have increased hair loss, rashes, joint pain, fatigue, etc. etc. etc. !

It is symptoms that should be treated, not just blood test results. Even the ds-DNA is not that well correlated to symptoms - many doctors with a lot of experience behind them will say that it can raise before a flare, during a flare, or several months after a flare. It's can't be relied on to determine whether a patient is flaring right now - especially without considering what the patient tells about his/her symptoms.

I have actually corrected my GP on her misconception about the sed rate being so important (along with my new rheumy). I hope I never hear such a thing again!
 

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My doctor goes by the way I feel. He says that bloods can be off the chart for some people who feel perfectly fine and they can sometimes be normal and have serious problems.
He always takes me serious even when my labs don't show anything. Maybe its they have been up and down so much...don't really know..but I am glad that he was the first rheumy I saw.
If I had went to someone who didn't believe me, I would have probably given up and who knows what would have become of me then.

Mary
 

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mine don't always, but my rheumie treats me by symptoms, not blood work. Especially my neuro symptoms.

I always have high anti-ds-dna, but they so quickly reach the < than whatever the highest number is that it is a little hard to say whether then are a useful indicator or not because they are off the scale anyway. So that's not much help.

So mostly we just use symptoms as a guide, and with me it is always my cns symptoms that cause problems.

hth

raglet
 

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While blood results are very important and show what is going on within the body, they do not always match up to how we feel physically. That is why it is VERY important to tell your physician in great deal just what is going on and how you feel. I was trained to trust the patient not the labs and I have always followed that lesson where pertent.

Always take to your physician about your results and what is going on with you, both inside and out.


Nancy
 

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Seems like all the doctors I've seen (specialists and GPs) have just gone by blood work, which has almost always been negative or so mildly positive they have disregarded it. I think in the UK it is hard to get seen by any sort of doctor for a long enough appointment to actually get to the bottom of symptoms, and when I've seen my specialists notes (in my medical file) they don't record half of what I've said anyway.
 

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I can say that I have only once had bloods that reflected how ill I was.There have been numerous times that I have dragged myself on the journey to my lupus clinic, aching from top to toe, and feeling like I was about to pass out! on Have bloods done,been kept in the hospital until the results come back because I had told the Doctor how awful I was feeling, then been told that I was fine!!
There have been other times that I have gone in feeling on top of the world, convinced that I was in remimsion, only to be told that my ESR was raised, and that this was high, and that was high,and that I was to be put on steroids immediately!
All this has never made any sense to me, and I have just come to the conclusion that Lupus is just a very odd disease pathology wise!!!
Another odd thing, doesn't the ESR indicate how much inflammation is happening in the body? This one time I limped in with a knee that looked like a football was growing out of it (slight exaggeration!) and my elbow was so inflamed that I couldn't even bend my arm, but the ESR was perfect!Never did understand that! Mind you that could have been fluid I suppose.
Oh well nobody could say what we have is run of the mill! I echo the sentiment that I wish Doctors here in Britain would listen more to how we feel.
sometimes my consultant having had all bloods coming back normal gives me this look, as if he thinks I'm putting it all on, and I hate that.
Rosie
 

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im same too only ANA and CRP, but doesnt always go as otheres have said:hehe: thats why were lupie ;) sorry you have to laugh now and again

take care Lin xx:)
 

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Hi Im Netty,
I too see doctors and rhuemys here in old blighty and agree that often i'm not taken seriously. Every time i have travelled the long journey up to the hospital i come away feeling exhausted, humiliated and without any answers!
I know i am not imagining this pain etc, but i still only get probable lupus, or lupus like. My bloods show slight rise ana and high inflammation dont know bout rest! all i ask is help me lead a normalish life! i know i'm lucky others here are far worse off than me, sorry to whinge!

take care all
nettyxxxxx
 

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Absolutely not, no way, nadda!

I've only had one positive ANA and one high sed rate. Since I started Plaquinel everything has been normal but I'm thankful that every doc I've seen has realised that if I turn up feeling bad (which I don't do often) then they know i'm feeling rough....and they can usually see how bad I feel.

My dermy actually commented at one point that if she didn't know I'd been diagnosed with lupus she'd say there was absolutely nothing wrong with me. Thankfully I saw her before I was diagnosed and she was the one that saw my bloods changing (Compliment, ANA & Rheumatoid factor) and felt that my tests would eventually indicate lupus.

Hugz,

Pam xxx
 

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Discussion Starter #15
I started off with high ESR, false positive VDRL and really high levels of dsDNA which was in the 700s and I got put on 50mg of pred which rapidly brought the levels down even till they were negative but I do get intermittent increases in dsDNA. But there are times when I have felt so bad with lots of stiffness that I can't get out of bed and real fatigue to be told that my dsDNA is negative so I can't be having a flare even though my esr is raised but at other times, I feel fine when my dsDNA is raised and with a normal esr. I do agree that neuro symptoms are very tricky as I get mainly neuro symptoms and I developed neuropathy even though my bloods were normal and it is really difficult to persuade my rheumatologist to treat when it happens as he believes more on his bld results. On so many occasions, I had to increase my pred dose by myself and this usually helps my neuro symptoms and also most of my bloods were not taken at times when I feel really terrible.
 
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