follow-up rheumatology appointment

Took Caitlin to the rheumy today and everything looks great. The dr ordered a full work-up again and wants to see if there is any increase in antibodies (I'm guessing the dsDNA) and said that if there is even a slight increase, they will go ahead and start her on Plaquenil. If it is the same as last time, they're going to hold off and wait until more physical symptoms appear.

Caitlin's wrist is still bothering her (not related to joint pain) so the dr decided it would be better for her to go ahead and have an MRI done with and without contrast just to make sure there is no damage to the tissue since this has been an ongoing problem. It really bothers her, but she doesn't let it stop her from tumbling on it. I think I would be more worried about it if she actually stopped tumbling. Her coach told me last night that Caitlin is on the verge of breaking her entire thumb (joints, tendons, and all) with the incorrect placement of her hand when she tumbles. Caitlin disagrees and thinks as long as it doesn't hurt to do it that way (saving her wrist from pain) then noone else should worry about it. (Stubborn girl...tired of anyone asking her if she is ok, she just wants to be left alone and doesn't want to talk about anything "wrong" with her.)

I will update again if there are changes with her labs, but I would be really surprised at this point if there are any.

So far, so good Pauline! Thanks for the update.

I hope they can take care of her wrist soon.

Gotta love MyChart online!!! I am able to get the test results as soon as the dr posts them which is so nice! About half of the tests are done, but the good news is her platelet count is 185, which isn't surprising since I gave her the shot the night before.

She does have some elevated test results showing up, but I don't think it is "too high" to cause concern. Her ESR, PT/INR, and LDH have come up elevated. Her wbc is very low...the lowest we've seen since diagnosis so I'm wondering if I will get a call from the dr later on. (Not sure why...she doesn't seem sick.) Her RBC, Hgb, and Hemacrit is right at the lowest of the normal range. Neutrophils are low which Lymphocytes are high, but that is normal for her.

The dr ordered 32 tests and 17 came back so far. The one I'm watching for the most is the ds DNA since that seems to be the one they're focusing on. (Sandi...can you tell me why they're focused on this one? Is this the one that has to be positive to diagnose Lupus other than meeting the "criteria"?)

Pauline:

The dsDNA is a biggie as far as Lupus is concerned. The ANA does not clinch a diagnosis...it just means that the person should be monitored if it is elevated enough. But when you add some other criteria to the ANA, like low C3 and C4, elevated SED rate, ITP and THEN the dsDNA, it's pretty conclusive that the person has Lupus. I had all of those things for a while and my dsDNA was negative. One day, it came up elevated and that was the day I got the diagnosis. I also had physical symptoms which Caitlin does not seem to have most of the time, so that also made a difference.

You don't have to have the dsDNA to be diagnosed, you can have a positive Anti-Sm instead, which is another type of antibody. They will also look at anti-Ro among other things. But yes, the dsDNA carries a lot of weight in diagnosis.

What is her SED rate?

I remember she was negative on her last anti-Sm.

I am assuming the ESR is the SED rate? If so, hers was 43 on a 0-15 range. C3 and C4 has also come back and both are in the normal range! TSH, and Free T4 are also normal. Can't tell if she has protein in her urine. It does give me a number, but no values to refer to, but I think that is more accurately measured through a 24 hour urine test.

Yes, ESR is SED rate. 43 is elevated, but not as bad as it could be.

I've never had an elevated Anti-Sm either. It's not common to have both the Anti-Sm and dsDNA come back positive.

Nothing new to really report, but DsDNA is still detected. Last time they gave me a titer, but maybe it just hasn't been posted. Everything else is still coming up within the normal range. No ANA results yet. Makes me wonder if they are doing that one...

My doctors haven't done the ANA for years. It's pointless once the dsDNA is positive.

I thought the ANA was still important and the DsDNA could change from time to time. This stuff is so confusing!

The dsDNA can change, but once it's positive, it's positive. The ANA is just a sort of a screen for autoimmunity. After other things show up, they don't need the screen any more. That's the only way I know to explain it. My dsDNA has been negative for over three years, but they still test it every time I go. They won't take away a Lupus diagnosis because the dsDNA is not elevated. I once joked with my doctor and said "maybe I don't have Lupus" because my labs had all been good. She just looked at me and said "I've seen your past labs, you do have Lupus". The ANA is just one small piece of the puzzle and is actually an insignificant one. That's weird because some inexperienced doctors are ready to diagnose Lupus based on just that. It happened to my sister with an ANA of 1:40.