I have rheumatoid nodules, but I'm "only" diagnosed with Undifferentiated Connective Tissue Disease. Can this be right?I have rheumatoid nodules, but I'm "only" diagnosed with Undifferentiated Connective Tissue Disease. Can this be right?

I'm a 30 year old female, and I've had a long list of rheumatological symptoms that all started just under two years ago. In summary:

Positive ANA, positive lupus-anticoagulant test, extremely low vitamin D (on supplements now), fevers, mouth ulcers, sores/lesions on my scalp and sometimes my forearms, mild Raynaud's, joint pain (sometimes severe) with stiffness and occasional swelling in many joints, migraines getting severely worse, possible simple seizures (they're testing me for that next week), memory gaps, severe fatigue, livedo reticularis, pericarditis (confirmed diagnosis by a cardiologist), costochondritis, and rheumatoid nodules (confirmed by biopsy).

According to my rheumatologist, my condition is still considered "undifferentiated" because I don't have antibodies of a specific rheumatological disease (no RA factor, no anti-CCP, no anti-dsDNA, and so on). They've run all the whole antibody panel once, and then just a few specific tests a second time. They're treating me (thank goodness) with plaquenil and indomethacin, which is mostly working, and they gave me tramadol for breakthrough pain.

I have no argument with the treatment (seeing as it's generally the same), but... does this seem like the correct diagnosis to you? If nothing else, the rheumatoid nodules seem out of place with the UCTD diagnosis. The nodules are fairly small, and only one caused me pain because of its location - that's the one they removed for biopsy, not because they thought it was a rheumatoid nodule, but because I complained that it hurt. I didn't think rheumatoid nodules showed up even in mild cases of RA, never mind Undifferentiated Connective Tissue Disease. I've heard the nodules can show up in lupus, too. So... what gives? Should I get a second opinion?

Much thanks in advance.

Answers from our Doctors

tshaver's picture
Dr. Timothy S. Shaver says:

You are correct that, generally speaking, rheumatoid nodules occur in patients with rheumatoid arthritis and are typically seen in patients with more severe disease. Only about 5% of rheumatoid nodules occur in rheumatoid arthritis patients that are rheumatoid factor negative. If you have an undifferentiated connective tissue disease (or overlap), it may be that you have features of lupus and rheumatoid arthritis concurrently, sometimes referred to as "rheupus." The big issue here is how well your disease is under control. If you are not experiencing any significant joint pain or swelling, the therapy you are receiving may be adequate. I would also make sure that there is no joint damage in some of your more symptomatic joints, because patients with rheumatoid nodules are at greater risk for damage. I have seen a few patients like you also, and you're correct in saying that there aren't a lot of differences in how these diseases are treated, but there are some therapies that can be given to more aggressive rheumatoid arthritis, or conversely for more aggressive lupus, that would not be as prudent to give for the other coexisting condition. The decision is which of the problems, or which of the manifestations of your illness, require the most aggressive treatment. It sounds like you are getting good an thorough care. Challenging problem! I wish you the best.

Wednesday, August 10, 2011 - 13:26

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Thank you. :)
Guest
08/10/2011 - 14:52

Thank you for the input and insights.

By and large, yes, I feel like the disease is well-controlled right now. When it flares up, I get pain and stiffness in almost every major joint at some point. Even my neck will be so stiff in the mornings I can't bend it. I could deal with the pain and stiffness if I weren't terrified that I'm going to end up with joints that are bent and twisted.

They checked my hands for joint damage by x-ray a year ago, and said they looked fine in those x-rays. Just some modest swelling and sponginess around the finger joints on physical exam. My rheumatologist doesn't plan to even see me for another year, so it will be two years between antibody checks and x-rays. That seems... like a long time to wait. I guess they figure I'll call if things get bad.

Right now, I'm doing okay, but my fear is that because they've classified my condition as "mild" and undifferentiated based on the negative antibody tests, when I have a bad flare-up, I'll be brushed off or given minimalist therapy. Last autumn, when I had pericarditis with a bad flare (which is when they finally started me on plaquenil), they only told me to take more ibuprofen to get the inflammation down. Nothing else. I took 2400 mg of ibuprofen a day for over a month before the chest pain finally eased off.

So, while the treatment seems adequate at the moment (except during flare-ups), the rheumatoid nodules make me wonder if this is more sinister than it looks, and whether my doc has dismissed that possibility with how he's classified my condition.

Anyway, thank you. This gives me some stuff to consider.

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