Lupus, Psoriatic Arthritis, or Both?
I am new to this site and am hoping to get some help and insight from the kind folks here. :) Please bear with the length of this first post . . . I need to give you enough background info to understand my question! I am a 31-year-old female with a laundry list of symptoms, some of which have lasted for most of my life. I was told I have fibromyalgia by a family doctor several years ago, but I've had numerous doctors since then tell me that I was just given that label because the doctor was too lazy to figure out what was really going on!
About two years ago I had a very strange reaction to a brief period of midday sun exposure. I've always burned easily (I'm very fair), but nothing like this. Within five minutes of being outside, I could literally feel the skin on my scalp, face, upper chest, and arms being burned. I retreated indoors. The next day, I was lobster-red on all of the exposed areas of my body. A few days later, things started to get weird. I began to feel exhausted, feverish, and achy, like I was coming down with the flu. My "sunburn" was gone, except for on my cheeks, which were still bright red and hot. The palms of my hands began to burn and the joints in my fingers began to swell and turn red and painful. Then I developed a frightening black spot in the center of my field of vision, which turned out to be a retinal hemorrhage called a Roth spot. Over the next several months, my list of nearly constant symptoms expanded:
Morning pain and stiffness, often lasting for hours
Low-grade fever and severe chills
Swollen, painful joints: Fingers, wrists, elbows, knees, ankles, toes
Pain and stiffness in Achilles tendons, making walking difficult
Flat red rash across cheeks that often burned or tingled and was very sun-sensitive
Sores in nose and mouth
Significant hair thinning (hair comes out handfuls when I shower)
Dry, irritated eyes and very dry mouth
Stomach pain and GERD
Heart palpitations and breathlessness (usually only a problem when all the other symptoms were at their worst)
I should also mention that I have a strong family history on both sides of autoimmune diseases, including Type 2 diabetes, RA, celiac disease, psoriasis, and sarcoidosis.
I went to a family doctor a few months after all this started and he ran labs, which all came back negative. I was told there was nothing at all the matter with me. After several more months of suffering, I switched to a new family doctor. This one actually took me seriously! She said there was definitely something autoimmune going on (probably lupus) and she referred me to a rheumatologist. The rheumy took one look through my list of symptoms and said "You have lupus. I'm very confident with this diagnosis, even though you haven't had a positive ANA yet. You probably will at some point, but we just haven't done the labs at the right time to catch it." I was started immediately on 400 mg of planquenil and 10 mg of prednisone.
In the months that followed I had troubles with tapering off the prednisone. The hope was that when the plaq kicked in that I could wean myself off of steroids, but I would go into a flare every time I tried. So we added oral methotrexate last August, but stopped in December because I couldn't tolerate the side effects. Next came azathioprine, but I got two ear infections, a sinus infection, and the flu all during the seven weeks I was on it, so that wasn't going to work either.
At my rheumy appointment this past March, I ended up seeing my rheumy's new nurse practitioner instead of him. I left the appointment, went home, and sobbed. She basically told me flat-out that I couldn't possibly have lupus because my ANA has always been negative. She asked a few questions, dismissing the answers that she didn't think were relevant and fixating on the few symptoms that supported HER diagnosis: Psoriatic Arthritis. She wanted me to try methotrexate again, this time by injection, and to add Humira into the mix. I felt so confused. After nearly two years of learning about lupus, coming to terms with my disease, and trying to manage my symptoms, now I have to start over with a new disease.
I've been doing my research, and the pieces just don't seem to fit. Some of my symptoms (back pain and Achilles tendon pain) make sense. My mother has severe psoriasis, so that fits. And I do have a very small patch of mild psoriasis on one elbow. These are, apparently, enough reasons to disregard the rheumy's diagnosis and switch gears entirely. She couldn't explain my terrible reactions to the sun, my fevers, rash on my cheeks, nose sores, hair loss, etc. She really made no reply when I asked her about those symptoms.
I see my rheumy in August (my ACTUAL rheumy, not the nurse this time) and I am feeling so confused and overwhelmed going into this appointment. I went ahead with the MTX injections, and I am tolerating them much better than the pills. However, I chose to wait on the Humira. I have read that it isn't used to treat lupus and can actually can trigger lupus-like symptoms. I didn't want to muddy the waters by taking that too, when we're trying to work through getting an accurate diagnosis. Do any of you have knowledge or first-hand experience with psoriatic arthritis? Is it possible that I may have BOTH? O_O I am so confused! In some ways, the treatments are similar, but in other ways the two diseases are very different. Lupus arthritis doesn't usually cause joint damage, but PsA can. This worries me because I am a pianist and piano teacher and I am struggling with some pretty severe hand pain right now. If it's lupus, then at least I know it's not destroying my joints. Also, sunlight is believed to help psoriasis, and patients are often told to spend time in the sun to help with the skin symptoms. But with lupus (and my own experience) sun exposure is bad, bad news.
If you're still reading, thanks so much for sticking with me! I have been feeling very overwhelmed by pain and fatigue lately, and the stress of not knowing what I ACTUALLY have is not helping. I am also worried about my upcoming appointment. This new diagnosis is just not sitting well with me, but I don't want to go in and act like I know better than the doctor.
Any help or advice you can give would be greatly appreciated.
No worries, hon. Its a long process and stressing won't make your situation much better. I too have psoriatic arthritis and now am getting diagnosed with what i think is lupus. I met with my new doc yesterday after testing pos ANA with speckled. Just remember the body plays tricks on us and kind of mimics what we read, if that makes sense. Any how, Im here if you need to talk. IM pretty stressed about the whole process myself. People on here don't reply to message too much so feel free to message me.