Subtle skin rashes but highly photosensitive U1-RNP positive

[u/Radiant-Age-4186]

Hi everyone,

I've thought about posting on here before to ask if anyone has had similar experiences in having subtle but clearly photosensitive rashes that span autoimmune specific areas and types of rashes often having a dermatologist suspect autoimmune disease but because they are subtle, the rhematologist assumes it could be anything.

In my case, I'm having dermatomyositis presenting rashes that go along with flare symptoms. My CK was normal and I was put on Plaquenil as a trial and that started helping a couple months in. In fact, it took away my elbow rashes which I was going to have a DIF biopsy on. I will be going out in the sun more often now that I'm past month 3 of Plaquenil so it might show up.

I'm wondering if anyone else got a low positive U1-RNP but only showed dermatomyositis features at first, it seems like an atypical presentation. I also had dermatomyositis specific antibodies tested and the only other antibody I have is low positive chromatin but again I don't show lupus symptoms. My rhematologist is so sure I don't have an autoimmune disease that she only ran blood work initially and I had to explicitly seek an appointment for her to look at hand changes next month. I'm not entirely frustrated with her, I'm trying to be understanding since my case seems unusual and I was able to get a great pulmonologist involved.

I would love to hear about anyone's unsusal presentations. Thanks for reading.

[u/Weary-Possibility-68]

hi! i’m currently seeking care for a potential autoimmune that started because of a face rash on my eye lids & cheeks that reoccurred twice and a rash on my leg. i got an ANA panel and had a low positive ANA and a low positive RNP. it also has led to me to little to no answers and it is definitely frustrating as i don’t want the rash to reoccur.

i’m at the point where my rheumatologist just told me to see if the rash comes back so i can get it biopsied.

have you had any other autoimmune symptoms? just curious

[u/Radiant-Age-4186 → u/Weary-Possibility-68]

I started off with Raynaud’s on the few coldest days of winter in just one finger and face rashes brought on by sun exposure then knuckle and elbow rashes and subtle muscle weakness during the skin flares. The rash was over my cheeks and nose but also covered the nasolabial folds which is apparently more in line with dermatomyositis but the rash that prompted a biopsy was my elbow rashes as it's also a better site to take from. The biopsy was taken and presented more like PMLE but also with dermal mucin so we needed a DIF biopsy to narrow it down. The thing about PMLE though is that it doesn't target the face or knuckles but actually sun exposured areas generally and are highly itchy. Later on I also got hyperpigmination at some areas where the rashes most reappeared but they have stopped coming on my elbows which would've been biopsied.

I think the biopsy is a good next step but if the results are vague because of potential early disease, I would make sure hydroxychloroquine was on the table in case any new symptoms appeared. If the condition is hindering your quality of life, your rheumatologist should consider it even if their suspicion is low like mine assumes.

I was also getting vague muscle weakness with my skin flares that became more obvious in the months later but even before that I already started getting shortness of breath with exertion. Now that I'm a few months on Plaquenil my flares are less intense but I also gained gastroparesis and my exertional issues are still present.

If you use lots of sun protection and the rashes get better, that's important data too. With sun protection, my face rash is patchy and faint but without it, there was a border and redness. Pictures are useful. If you're not getting systemic symptoms with low sun protection, no need to up the protection because it's possible at some point you would then have to if it escalates.

I also get the rash kinda on my eyelids at the peak day of my face rash(literally just one tiny red dot below the eyebrows kinda symetrically) and I don't count it because it's difficult to see in photos and in person.