Table 3.
Patients’ perspectives on SLE flares.
| Symptoms | A lupus flare to me means having that rash come up again, having abnormal bloodwork, seeing that blood or orange tinge to my urine again, even when I’m drinking tons of water, having that chest pain again, kinda feeling that tiredness again, and the widespread pain, or even pain in my joints. And usually, if I’m feeling that tiredness. (34yo female with Mixed SLE) |
| I don’t know I’m in a lupus flare until I can’t function. I’d be thinking I’m just exhausted. I start the itching and being depressed, crying. I can’t move. I’m trying to move from point A to point B, and I can’t get there. It takes me longer. When people talk to me, I’m incoherent. I’m in pain. It’s like my whole body goes into a tailspin. (59yo female with Type 2 SLE) | |
| Duration | There are milder ones like where I just have the rash and maybe some chest pain, but not the fluid around the heart or lungs, or just mild stuff like brain fog, chest pain maybe, and fatigue and lack of appetite. Those are shorter than those that I have like pericarditis or pleurisy. Usually the ones with pleurisy last, or pericarditis, last longer (48yo female with Mixed SLE) |
| They can last anywhere from a day to a week, depending on whether or not you believe what’s causing them. (49yo female with Type 2 SLE) | |
| Triggers | Well, I just think the regular stressors that everybody goes through in life can definitely flare up your lupus. You have to be really careful not to overextend yourself, not to make too many commitments. I think if you’re working, job stress can definitely contribute to a flare-up. (46yo female with Type 1 SLE) |
| Once I became a military spouse, I think my anxiety hit to a new level because the constant moving, having to find new doctors, having to find a new job, learning a brand new area, the fear of the unknown, walking into new territory, not knowing anyone, not having any friends or anything. (32yo female with Type 1 SLE) | |
| Management | To manage the flares, I’ll usually call the doctor, let them know the symptoms that I’m feeling. If it’s – I have prednisone at the house… And if they suggest it.. prednisone in a pack at the pharmacy for me, just in case I need that extra boost to help with the joint pain. So, I’ll wait for whatever prescription that they give me. And I’d get some rest, if it’s at all possible for me to do that. And they usually send me to get bloodwork done. (34 yo female with Mixed SLE) |
| I generally try to get more sleep. […] I would make sure that I eat very, very clean and very healthy better than flare ups. I will try to just rest as much as possible. Catnap anything go to bed earlier. I know some suggest taking a walk and doing something somewhat active. But in my experience with my really bad flare ups, that just making things even more miserable for myself. (23yo male with Type 1 SLE) | |
| Impact | I think it’s a temporary interruption in my day-to-day.[…] I still go to work, I still would do my meetings […] I make sure I’m taking my medication […] It’s just a temporary - maybe like I would call it like a speedbump – that slows me down, but it definitely doesn’t stop me. (24 yo female with minimal SLE) |
| If I’m – have a general flare-up, I just feel like – I can’t do anything. I can’t even get outta bed (61yo female with Mixed SLE) |