blood results vs your symptoms | Arthritis Information

 

When you have your blood work done do your results seem to match how you have been feeling?

Oh, I am so glad I'm not the only one who feels crazy with this disease! There are some days when I feel pretty good and find myself thinking "maybe I don't really have RA." Then the next day I have to force myself out of bed in the morning. If someone walks past me with a cold, I get it twice as bad. My skin is so thin that a simple bump on a table, the car, or anything will lead to a triangular bleeding cut. My hair is thinning. Last summer I had osteomyelitis in my jaw and medications for that caused an intestinal infection that had me is the hospital for a week. This summer I'm being poked and prodded to try to determine why I have to spend half the day in the bathroom. All my tests come back negative and yet I feel like crap - literally and figuratively. I do my best to keep my spirits up and not think about the hassles - all my friends and family compliment me on how well I deal with it. Inside I want to scream. Thanks for letting me vent.
Mary...I do that "maybe I don't really have RA" thing all the time.  Something always pops the bubble.  I wish I'd just stop it. I do the maybe I don't have RA thing too- especially since I'm sero-negative. WTB~  Oh.  I never actually answered that did I?   What I was trying to say is that my blood tests don't reflect the general achiness I have at times, like say, the way my shoulder feels right now would not show on a blood test.  But if I am flaring when I have the test, it shows.I frequently find that my blood results don't match how I'm feeling.  ESR and CRP are always high, but sometimes both dive when I'm feeling worse, or both rise when I'm feeling better, but my "favorite" is when one goes up and the other goes down, then reverses next month.  It's gotten to the point that when I ask my RD what the results were, he says that's really not important compared to the results of my exam.See- it's not just me. As you all know I have been battling with whether or not I should add a biologic to my MTX or not.  I tell myself well if my blood results are good that means my RA is inactive and there is no reason.  But I don't feel good. Or I feel good but this blood test shows elevated markers. What exactly determines the severity of your RA? Why does everything have to flucuate so much? Why must we walk around feeling like ticking time bombs? Worse yet are those of us who have constant bombs going off on a daily basis. I hate RA.

No, you're not alone....far from it.  For 18 months I was told I was in clinical remission, labs returned to normal for those months. At 18 months CR MRIs of wrists and fingers confirmed active disease and extensive on going damage done while in clinical remission.   I didn't have any hand or wrist pain other than a little achiness that I blamed on damage.  I had an MRI of one hand when I was told initially that I was in clinical remission and it showed a very small amount of synovial fluid and it was thought that it was decreasing fluid.   Seems like synovial fluid increased over those 18 months along with damage even though I was basically symptom free and labs completely normal for the first time in 11 years!!

With this disease I've learned never to take anything for granted and that your RA isn't like anyone else's.  Every single person and how they react to the disease and treatment is different from one another. 

Hi WTB,  No; you're not crazy.  My bloodwork doesn't always reflect the way I feel.  I think I remember my rd telling me that they don't always match the way we feel because there is a delay in inflammation showing up on a sed rate or crp.  I think I remember her telling me they just look at the numbers as an average but when we go into a flare it does not elevate sed rates until quite a bit of time has elapsed.  I do not rely on my bloodwork for the most part.  I too and seronegative so I know how you feel.  I have seen improvement (overall) in my condition after I added enbrel to my mix.  Even though I am in an active flare right now, I hadn't been in one for about 1 year.  Hope you feel better soon.  HGI have NO RA blood markers.. I cannot differentiate a good result from a bad one by bloodwork.. basically, my blood work is to watch my kidneys and Liver ..... [QUOTE=babs10]I have NO RA blood markers.. I cannot differentiate a good result from a bad one by bloodwork.. basically, my blood work is to watch my kidneys and Liver ..... [/QUOTE] RA, the great trickster.

I've only had SED and CRP tested when first diagnosed and not since then in over two years.  Oops - forgot  - one add'l CRP this spring.   SED only slightly elevated, CRP normal both times.  But, other blood work was positive so easier for dx.  I asked my RD once why SED and CRP aren't tested and she said they can go up and down and not really mean a whole lot, so only monitors for liver and kidney (same as Babs)   Activity/severity based on joints and how you feel, not the blood work in her practice.    Although after LinB posted her experience a while back, it still has me concerned that damage can occur even when there are no symptoms.  I guess I'll stick with my enbrel/mtx even if I continue to feel good.

Hope you have a good appt. I know you've been wrestling with adding a biologic for some time now.    I've been diagnosed since Apr 2009 and have been on MTX and Prednisone since.  I'm trying to taper down on Prednisone and continue to increase MTX.  I have very minimal pain and my numbers are sky high each month, except for liver and kidney.  Needless to say, other than feeling exhausted and the breakouts around my nose and mouth, I can't complain.   I was in alot of pain from last fall until the diagnosis.  I just hate those numbers each month.  I think I'm in remission because I have minimal discomfort but I keep waiting for a flair because the numbers are still so high.  good luck tonight, wantto Echoing Babs! Good luck, best wishes, and cheers!! Well....I had one of "those" appointments. The waiting room was full which it almost never is. I waited  for a good 45 minutes and then had a very short visit. He as he always does commented on how I am a far different patient than when he saw me first and he gets all happy. Then when he asks me how I am doing over all- me the people pleaser says oh not awful, I mean I don't feel well but nothing like I was in the beginning. I forget all about the shooting pains and extra stiffness and swelling I have been experiencing and never mention it.  We discuss my gum surgery and the fact that the wbc  count has returned to normal but my teeth hurt more now then they did prior. He says at my follow up visit Monday tell the dentist and see if he feels the infection is cleared up or can be cleared up with out going off the MTX. He says if you need an antibiotic it's fine with me. He never uttered the word biologic- so neither do I. He was happy with my labs. See you in 2 months.  Maybe deep down you don't want to mention the shooting pains and the  extra stiffness and swelling so that the "B" word doesn't come up?  Just a thought....anyway, thanks for posting. I was hoping you would.  Now I can go to bed.  Hope tomorrow will be a better day for you.  i had the same thought as linn about not talking about the shooters..etc.... babs102009-08-20 19:01:45Linncn- I think you're right- I thought the same thing as I got into my car. Thanks for understanding! WTB, my sincerest hope for you is that you'll never need a biologic.  Not because it's so awful, biologics are a blessing to many of us.  But just because I know how badly you don't want it.  But I also hope that if and when you do, you won't ignore it and allow for damage that will affect you for the rest of your life. You take care of yourself, my friend.Awwwww I love this place! Thanks Sno! You always make me feel so much better! I think I'm going to start a symptom log for myself again and then write a letter when I get a handle on things. Somehow I can keep my thoughts together better when I write. Then he can call or I can go in and we can address my concerns.Wannabe, I agree about keeping a "written record". I know that without my journal in hand I would be unable to rationally and reasonable discuss all the talking points with my physicians. One of those doctors requested that I compose a letter to him and email it to his office a couple of days before any scheduled appointment.

I have even resorted to using a pocket size tape recorder so I know what was said, as I tend to dis-remember (or sometimes ignore...) advise and instructions.

Yes, I certainly agree about being better organized through the written word that I am through the spoken word.

Cheers!
Shug- I get so lazy about logging things in a journal- a pocket size tape recorder sounds good.
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