Rhupus: An RA and Lupus Overlap?
I’m sick. Again. I haven’t been doing well. For the past few months, a cocktail of symptoms have plagued my body: fatigue, dry mouth and eyes, depression, sun sensitivity, rash, general joint pain, etc. I come home from work most days not able to do anything except lay down and rest, something that generally hasn’t happened since starting Humira.
Malar rash: a hallmark symptom of lupus
I thought this was just related to taking Humira and having RA; however, after returning home one day, I stopped to look at myself in the mirror and noticed that I had developed what looked to be a butterfly (malar) rash over the tops of my cheeks and the bridge of my nose. It was hot, red, and had a few bumps in it.
Ten minutes later, I get a call from CVS Specialty (that’s how I get my Humira) and in one of those great “coincidences” of life, the nurse asks me (after many other questions), “Have you noticed any instances of a butterfly/malar rash?” After talking with the nurse at length, she told me that I needed to talk to my rheumatologist about all these symptoms, particularly the malar rash, since it’s the hallmark symptom of lupus.
My symptoms were indicative of lupus
And off to the rheumatologist, I went (thankfully, I had an appointment coming up soon). I discussed with him the multiple symptoms I was experiencing and showed him pictures of what I thought were malar rashes. He said that some of the rashes did look to be malar rashes and that my symptoms were consistent with a lupus diagnosis.
What made it more convincing for him was that when I had my first round of rheumatology bloodwork completed—which included an ANA test with a whole range of other antibodies test (such as DS-DNA, SM, J, and other antibodies)—I had tested borderline positive on the ANA (at a titer of 1:80) and borderline positive for the DS-DNA (at 12, with above 9 being positive. The DS DNA antibody is highly specific and sensitive to diagnosing lupus, with a positive reading indicating a stronger possibility of having lupus.
Tests and more tests for lupus
Given my medical history and my new symptoms, he ordered all of the lupus tests (which included the ANA, DS-DNA, and other complement tests). He also added a rheumatoid factor test and an anti-CCP (cyclic citrullinated peptide) test to measure my inflammation and the progression of RA. As of this week, my new ANA result is significantly higher (with a titer of 1:640) but with the same reading for the DS DNA (at 12). My RF and anti-CCP tests are still very high, even with the Humira and other medications I’m taking.
Hesistancy in giving an official lupus diagnosis
My rheumatologist was concerned about the increase in the ANA titer but, because my DS DNA reading was the same, he was hesitant about officially diagnosing me with lupus. Plus, I’ve been on Plaquenil since last October, so even if I did have lupus, it would be a mild form of the condition and would, therefore, be effectively treated by the Plaquenil. Essentially, these results were a warning flag for what could potentially be on the horizon, and we agreed to test again in 3 months to see if there had been any progression.
What does this mean for me?
While I’m extremely elated to not have a lupus diagnosis at this time, it does make me wonder why I’m experiencing the symptoms that I’m having. My rheumatologist said that it could be the cold weather, it could be my medication, it could be a whole host of things. But, for the time being, I am supposed to rest more than before, make sure I sleep enough, and eat well. And that if things develop for the worse, I have to immediately go to my rheumatologist.
Lupus and rheumatoid arthritis: why is this happening?
Not just to me, but in general. It’s only been a little over a year since I was diagnosed with RA and now there’s a possibility that I could have lupus, another autoimmune disease. I’m only 22 (soon to be 23). Having one disease is hard enough but potentially having another disease scares me to the core. This isn’t how life is supposed to be, but I cannot change that.
Which is why it’s so difficult to walk this delicate balance between feeling upset and mournful for the life I could have had without these illnesses and feeling grateful for having the means to go the rheumatologist to figure out what is wrong, to be able to pay for medications that help my body, to even just be alive right now. Which makes me think that maybe the question of “Why is this happening” is not the best one to ask; rather, I should ask “What can I do about this?" and "How can I grow from this?” Which is easier said than done.
On a scale of 1(low) to 5(high), how difficult is it for you to talk about having RA?