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
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.
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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.
I was diagnosed with Rheupus. I was originally Diagnosed with PMR at 30 My Rheumatologist said no. ( I believed him) Then I became posative for Lupus per the Doc. I had +ANA, CPk The other tests I don't remember I do remember speckled & another word. I never got damage and my RA became - and has stayed neg. as far as I know for 30 years , But I have always been posative for Lupus.I have been through all the joint pain 2 rotator cuuf tears bilat. One cerrective surgery on left. I too had rheumatoid nodules on the bottom of each toe, huge . They grew very fast and I could not walk the Biopsy confirmed rh. nodules. We moved several time and the doctor I have now say I have fibromyalgia because my hands and finger do not swell with a flare. They use to. Now its differant things, Which he says are all flukes. Hoshemotos, skin rashes,inflamation around my heart & lung can't remember names (confirmed) I have dementia, I am now again running a temp of 99.7 to 100.2-4. I am EXTREMELY tired I am always having stomac and bowel crampd and also severe cramps in my legs where ever I get cold my toes and fingers turn bluish purple to white. and migraind. I am not on any medication, because he thinks I am fine????
In reference to your comment about leg cramps and cold toes that turn blue to purple then white. This is my second year with those same symptoms. Last year, the first year with the extremely cold toes that were just as you described and visits to 4 different Drs , none of them could tell me what was wrong. My toes, on both feet, extremely cold, first one foot and a few days later the other sides toes. They were very swollen, eventually, the swelling started going down and I had on several toes what appeared to be like a blood blister, a big blue/black dot. Then one day the dots started peeling off, like a scab on a wound. This year or Dec 27th first a charley horse in left leg during the night, next morning left toe started hurting and it was "Here we go Again" today Feb 15, 2013, and its in both feet/toes. After 2appointments this year w/ two new Drs, never seen by me before, I was finally Diagnosed with "Raynauds ". I found this website after I found the site for tha National Registration site. Which I found after reading a research study on the Mayo Clinic Research web site. Their pictures looked exactly like mine. I've never been diagnosed with Arthritis before or yet! From what I've read about Raynauds, can be caused by a prior injury. I'm starting to think, that since before 2011, I've never had a problem but feet were severely burned, as I was trapped in my home during a Fire. I had many other sever burns all have left scars and except for discoloration all has healed with the exception on one on mt left shoulder that still hurts if touched, only cure is to surgically remove nerves, I refuse to pay for pain to get rid of pain. Hope this may shed some light on your cold toes I live on the Texas Gulf Coast where it's pretty warm most of the year. On both occasions with my feet, it seems to start as the temp falls. I'm preparing now for next year to try and ward this off at the pass I don't want this again, can't wear shoes due to swelling and pain, so it makes going out and normal daily chores around the house almost impossible. It's painful and very annoying because of the inactivity Hope this helps someone else.
Seems like it’s a dangerous disease, but I never heard of it. The symptoms you are telling are very painful and you are only 30 and have a right to live a healthy life ahead. I think you have to take second opinion from other rheumatologist at least once. May God help you.
Thanks
That can or cannot be the problem. It actually is based upon your muscles and lies mostly upon your tissues. If your tissues are mostly of the kind of those strong things then you might very well be out of problems. If they resists stretching then it might cause the problems.