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February 3, 2010 at 9:26 pm #303400sueraParticipant
do you have done regularly? My doctor never does RA Factor, BUN, nor anti-CCP….should I be concerned?
He does WBC,RBC, Creatinine, CRP, ESR and Total bilirubin. All of these are either high or low and he never seems concerned. Maybe I should be looking for another doctor.
Is there a link that can help one make heads or tails of their results, when to get concerned and when not to sweat it?
Thanks,
SueFebruary 4, 2010 at 1:20 am #340530MazKeymaster[user=64]sue/ra[/user] wrote:
do you have done regularly? My doctor never does RA Factor, BUN, nor anti-CCP….should I be concerned?
He does WBC,RBC, Creatinine, CRP, ESR and Total bilirubin. All of these are either high or low and he never seems concerned. Maybe I should be looking for another doctor.
Is there a link that can help one make heads or tails of their results, when to get concerned and when not to sweat it?
Hi Sue,
Here is a link on the main site re: labs:
https://www.roadback.org/index.cfm?fuseaction=studies.display&display_id=184#Anchor-Appendix-7638
Since that page was added (some years ago now), the newer anti-CCP test has been added to the RA diagnosis/prognosis arsenal.
My doc runs full blood count, liver and pancreatic function tests, kidney function tests and also cardio-CRP (doesn't bother with my SED as it's always normal and CRP is said to be a better gauge of inflam), RF and anti-CCP. He also runs a specific immune complex test called C3D, which is to watch for disease activity and circulating antibodies/antigens. All of the above are tested monthly, but my ANA is only tested every 6 months, as it's always read negative. Anything that reads out of range is watched carefully and I am given info about it or we change up my meds to rectify the problem.
Most rheumies won't watch RF or anti-CCP with any regularity, as they are primarily used for diagnosis and prognosis. However, my doc uses these markers as an indicator of when I may be plateauing on antibiotic therapy (for Lyme) and when it is time to change up my protocol. These numbers absolutely respond to appropriate antibiotic therapy, but are considered unimportant when on immunosuppressive meds, as they are not expected to come down.
Not all AP docs will read these numbers regularly either and it really depends on the MO of each doc. I was particularly severe, so I would see my doc monthly in the beginning and we've just continued with the monthly labs, so he can call me in if we need to adjust anything. If you're concerned, your doc won't help, and you want to watch those numbers, then you may need to change docs to one who will monitor these numbers more closely for you.
You're on Enbrel – are you also on AP? If only on Enbrel, then it may not be of much value to watch your RF and anti-CCP. These numbers aren't expected to change much on immunosuppressive meds, so may be pointless to re-check them often. However, if you're interested, check out Spacehoppa's (also a young Mom with small children) progress on antibiotic therapy while on Humira for her RA (which she recently discovered was caused by Lyme). Her numbers are responding incredibly well while on antibiotic therapy and she has just been able to come off her Humira.
Hope you're doing okay, Sue, and nice to see you check in once in a while! 😀
Peace, Maz
February 4, 2010 at 2:00 am #340531sueraParticipantThanks so much Maz. I check in more than you know as I trust all of you more than any of the doctors I have met. I am on Enbrel and finally feeling pretty good….so good in fact I have energy to fight again, thus thinking I might start AP again so I am curious to read Spacehoppa story, thanks so much.
February 4, 2010 at 11:55 pm #340532sueraParticipantMaz, I don't see Spacehoppa's personal thread, am I missing it? What page?
Sorry to bother you again, it's probably right under my nose but I don't see it!:?
Thanks,
SueFebruary 5, 2010 at 2:20 am #340533MazKeymaster[user=64]sue/ra[/user] wrote:
Maz, I don't see Spacehoppa's personal thread, am I missing it? What page?
Sorry to bother you again, it's probably right under my nose but I don't see it!:?Ooops, sorry, didn't realise you were asking for the link before, Sue. Here it is…you might want to start from the beginning of Ruth's video clips and work through to present, but may take some time, as there are quite a few. Think it's fantastic that Ruth is doing this and sharing her experience so freely like this, as it really exemplifies the journey that someone with longstanding disease might need to take, but how worth it, it is!
http://www.youtube.com/user/ruthheasman
Here is the discussion thread where she shares her recent labs – incredible! 😀
http://rbfbb.org/view_topic.php?id=3781&forum_id=1
Sue, so wonderful you're in a place to begin to start thinking about AP again…I remember so well how hard it was for you to manage with your young ones. I think you might receive a lot of inspiration from Ruth's progress.
Peace, Maz
February 5, 2010 at 2:37 pm #340534sueraParticipantThank you so much Maz, I'll get reading. This go around I want to be better prepared in dealing with the doctor. I have the energy and a tad more brain function, thanks to a bit of brain fog lifting, not all but a bit;). I'll be back.
Thanks,
Sue -
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