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Posted By : siosio05 - 11/30/2016 8:42 PM
So I've had two appointments with my rheumatologist, and with my list of symptoms (joint pain, fatigue, psoriasis, Raynauds, pain under my left rib cage) my rheumatologist did a blood panel and some x-rays

The x-rays showed erosion/deterioration in my left hip, ankle, and sacroilliac joint, as well as narrowing in my right sacroilliac joint, and finally a straight cervical spine (i.e. no curve in neck).

My blood labs were fairly normal, with the exception of my anti-RNP antibodies which were pegged at 4.7 (with normal being <1). My initial ANA was positive, but the second ANA at a higher titre was negative.

When she went over my labs, she mentioned that a high RNP was found in MCTD, but didn't say whether or not she thought I had it. So far, she has me diagnosed with psoriatic arthritis, and has me on Meloxicam after I couldn't handle a stronger sodium-based NSAID (Diclofenac).

They had me make a follow-up appointment in two months, for January, and see a cardiologist in the meantime to see if the pain under my left rib combined with syncope and QT wave prolongation, could be due to a heart problem.

I guess what I'm kind of unsettled by is the fact that I had a high anti-RNP count, but this apparently wasn't indicative of MCTD. Should I call the office back and ask them to clarify whether or not I have this, or just wait until January?

Posted By : couchtater - 11/30/2016 10:22 PM
Besides pain killer are you on any other medicines?

I have sero-negative psoriactic arthritis along with my lupus and am on Leflunomide and plaquinel. It's helped for several years.
Joy
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, diabetes, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Posted By : Lynnwood - 11/30/2016 10:25 PM
Welcome to HW,

My guess, and it is really just a guess, is that your Dr is NOT diagnosing MCTD - that's based mostly on the fact that she doesn't seem to be treating you for MCTD, but also partly on your symptoms. If you feel uncomfortable about this, do feel free to call the office and ask about what diagnosis is on your bill.

I am puzzled by your statement, "My initial ANA was positive, but the second ANA at a higher titre was negative." Generally the ANA result is either negative (no titre reported) or it is positive (and the related titre reported). I don't understand a higher titre that is negative?
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

Posted By : siosio05 - 11/30/2016 11:27 PM
@couchtater: currently no other medication related to this particular illness.

@Lynwood: the diagnosis/not diagnosis is partly what's confusing me. She didn't outright say, "I don't think you have MCTD", she just said that the antibody is found in people with MCTD, that it's in my blood, and left it at that, without confirming or denying if she thinks I have it.

I did try calling the rheumatology office last week, and was handed off to a nurse who admitted that he didn't understand the rheumatological results section of the lab, and relayed that the NP said my labs were vague, which also confused me because he didn't clarify why they were vague. Or why a high anti-RNP would be considered vague. I'm guessing it's probably vague in context of the rest of the blood work and my symptoms, but that's only my guess.

I apologize for my lack of clarity. My GP did a round of blood work before I was referred to the rheumatologist, where the ANA was positive (no titre reported). My rheumatologist did another test, specifically called "Antinuclear Antibodies, IFA", which showed negative at 1:80 titre. (Some googling explained that initial ANA screening is done at 1:40, so I showed positive at the very lowest dilution, but not at the second stage of dilution of 1:80.)

The only other persistent result that was off from both labs was I have low ferritin.

I'm not uncomfortable with the diagnosis per se, I'm just confused as to why that particular abnormal anti-RNP lab result is not being discussed with me. If they think it's nothing to be concerned about, I would have liked an explicit statement. If they're keeping an eye on it, and just waiting to see what happens in the future, that's also fine, but I would have appreciated that being made explicit to me.

But not being a medical professional, all I have is a dearth of information from my practitioners, and a lab result that says anti-RNP 4.7.

I'm just trying to figure out if it's something I should even try to approach my rheumatologist about, or if I'm getting too worked up over nothing.

Posted By : Lynnwood - 12/1/2016 12:08 AM
You may be worrying about it a bit more than needed, but you certainly have good & valid questions which they should be able to answer to your satisfaction. Maybe she was just running the possibilities thru her head and MCTD was one of the things she was considering. Either way, your being perfectly reasonable in wanting to know more!

Sometimes we have to ask the questions because otherwise they assume we are one of the patients who don't read the labs, or don't want to know that level of detail. Once you have an established relationship with the Dr, they get to understand how involved a patient you are, and generally act accordingly.

I've been around Lupus & ANA results a long time, and that is a most unusual way they chose to report it. Generally they'd just say positive 1:40, and leave it at that. It's implied/understood that it's negative at the tire above the one they put on the lab result. Makes me wonder, are you in the US? Sometimes other countries do it differently.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
DIAGNOSING LUPUS & HW's LUPUS 101
"Life is far too important to be taken seriously." - Oscar Wilde

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