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bloodwork?

Started by Friedbrain, January 28, 2013, 11:16:55 AM

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Friedbrain

Just curious what kind of repetitive bloodwork is necessary and/or helpful.  To a large extent, I believe that the more tests and results that I can obtain (for tracking purpooses), the better.  But I also like having blood, so I'd rather not have blood taken out of me for tests that are not useful. So wondering, when you have tests repeated, what does your doc test for?  I have had SO many tests done over the past year.......have been actually feeling doctored out but I DO want to know what my body's status is so I'm looking forward to checking it (I've been wondering if I have lymph node enlargement because my armpits and down my side (?) have been sore and or nausious-inducing for about the last week (and the bump on the back of my head is back).  Anyway, rheum asked for
CBC and differential (good!)
comprehensive metabolic panel (sure, fine)
rheumatoid factor (not sure why)
Sed rate (never been positive; if anything, I personally think it's low at 2.  Consistently)
C Reactive Protein (In all my years of being sick, this has been positive only once, and that was the time I was admitted into the hosptial from the ER.....ie, a CRISIS.  It's my understanding that CRP is only elevated at the onset of crisis, so I'm not sure how useful it is to measure repeatedly, as a sign of inflammation).

She DIDN'T ask for C3 and C4, which have been consistently low for the past year.  As an aside, are there any other tests that can try to tease out the meaning of low C3/C4?  The only antibody that has been positive recently is SSb (she has never measured TPO, but that was positive a long time ago; maybe they just assume that stays positive?), and was positive the last time she tested, in Oct.

mshistory

Has your RF ever been positive? My rheumatologist checks my RF once a year because a positive RF that suddenly becomes negative can be a warning sign of lymphoma.

With just a diagnosis of primary SjS, I never had my complement levels rechecked either.

With a diagnosis of SLE and secondary SjS, this is my "every 3 months" blood work:

anti-dsDNA
C3/C4 complement
CBC and differential
Comprehensive metabolic panel
CRP
SED

At my request, we are also checking TSH and T4 once a year because thyroid disease runs in my family.
SLE and SjS with PN. ANA >1:1280 speckled,
SS-A >8.0, RF positive. Botox for migraines, Clonazepam, Zoloft, Imitrex for migraines, CellCept 1000 mg, Plaquenil 200 mg, Restasis, Zofran for nausea, Gabapentin, Evoxac and Norco for pain.

Lesley_x

Quote from: Friedbrain on January 28, 2013, 11:16:55 AM
Just curious what kind of repetitive bloodwork is necessary and/or helpful.  To a large extent, I believe that the more tests and results that I can obtain (for tracking purpooses), the better.  But I also like having blood, so I'd rather not have blood taken out of me for tests that are not useful. So wondering, when you have tests repeated, what does your doc test for?  I have had SO many tests done over the past year.......have been actually feeling doctored out but I DO want to know what my body's status is so I'm looking forward to checking it (I've been wondering if I have lymph node enlargement because my armpits and down my side (?) have been sore and or nausious-inducing for about the last week (and the bump on the back of my head is back).  Anyway, rheum asked for
CBC and differential (good!)
comprehensive metabolic panel (sure, fine)
rheumatoid factor (not sure why)
Sed rate (never been positive; if anything, I personally think it's low at 2.  Consistently)
C Reactive Protein (In all my years of being sick, this has been positive only once, and that was the time I was admitted into the hosptial from the ER.....ie, a CRISIS.  It's my understanding that CRP is only elevated at the onset of crisis, so I'm not sure how useful it is to measure repeatedly, as a sign of inflammation).

She DIDN'T ask for C3 and C4, which have been consistently low for the past year.  As an aside, are there any other tests that can try to tease out the meaning of low C3/C4?  The only antibody that has been positive recently is SSb (she has never measured TPO, but that was positive a long time ago; maybe they just assume that stays positive?), and was positive the last time she tested, in Oct.

Sounds similar to what my rheumatologist tests. I think my complement was only checked as a very sick inpatient, and it's low. It can be low in sjogren's and I think from what I remember it tends to indicate more severe disease.

My ESR is consistently raised unless under treatment and an excellent indicator of how I'm feeling. CRP always negative.

Rheumatoid factor can be positive in sjogren's and other autoimmune conditions, not always associated with rheumatoid arthritis as you might expect. Mine is positive. A sudden change to negative can indicate lymphoma as mshistory said so a good reason to monitor.

My rheum also tests things like creatinine (kidneys/muscle breakdown), liver function (I have transaminitis if not under tx), occasionally thyroid function as I have a goitre but no thyroid disease as of yet.

For what it's worth all my lymph nodes are permanently enlarged throughout my body, most noticeably in my neck. When the rheumatologist first noticed them they were enlarged in my neck, armpits and groin. The doc was even planning a biopsy she thought it was lymphoma, sent me for a chest x-ray and ct scan. I was terrified, will never forget the feeling being told you might have cancer at 21. CT scan showed they were enlarged around my guts, blood vessels, everywhere. Just another crummy symptom of sjogren's. So they don't have to mean anything other than your immune system is making them overreact.

Sorry I've kind of rambled in this post haha.

Friedbrain

No, thank you SO MUCH for the rambling and responses!  I was up a lot last night with my 8 yo dog, whom I found out one week ago has lymphoma.  I took him in for a cough, and it turned out that his lymph nodes are the size of golf balls (one was strangling his trachea) and he's dying.  While laying there with him last night, I had time and quiet to notice that the right side of my body's lymph node sites were all achining.  Very mildly, but with all that time to think (and, ok, a bit of googling on my iphone on the dark), it dawned on me that the right back of my head, under my right jaw, my right armpit, and yes, my right groin were all mildly aching.  DOH, why did my rheum not realize that when I asked her about it yesterday?  So then, yes, I went that extra step to start thinking about lymphoma like my dog. 

So I was QUITE relieved to read your post this morning.  I'm going for the bloodwork now and have an appt to see my family doctor tomorrow for follow up.  Hopefully it's nothing.  Thanks!

slccom

Quote from: Friedbrain on January 29, 2013, 06:13:12 AM
No, thank you SO MUCH for the rambling and responses!  I was up a lot last night with my 8 yo dog, whom I found out one week ago has lymphoma.  I took him in for a cough, and it turned out that his lymph nodes are the size of golf balls (one was strangling his trachea) and he's dying.  While laying there with him last night, I had time and quiet to notice that the right side of my body's lymph node sites were all achining.  Very mildly, but with all that time to think (and, ok, a bit of googling on my iphone on the dark), it dawned on me that the right back of my head, under my right jaw, my right armpit, and yes, my right groin were all mildly aching.  DOH, why did my rheum not realize that when I asked her about it yesterday?  So then, yes, I went that extra step to start thinking about lymphoma like my dog. 

So I was QUITE relieved to read your post this morning.  I'm going for the bloodwork now and have an appt to see my family doctor tomorrow for follow up.  Hopefully it's nothing.  Thanks!

I'm so sorry about your beloved baby! That is the one thing I hate about dogs and other pets!
Hugs, Sharon