Two months ago, I was diagnosed with Sjogren's Syndrome with a possible lupus overlap. I didn't have a clue that I was having AI issues - just thought the joint pain, intestinal issues, etc were random things. This past summer, I went to my PCP because I was having esophageal discomfort and mentioned to him that I have pain in several joints. He ordered blood work thinking possible RA. My sed rate was normal, but my ANA was 1:1280 so he referred me to a rheumy who had more lab tests run. I don't know the results of all of them except that the anti-SSA (Ro) was positive (8.0). I have recently started to have dryness issues so with this and the labs, my rheumy game me the above diagnosis.
I have been concentrating on researching the SjS since that diagnosis was definite, but have recently been checking out lupus since that's still a possibility. It is not uncommon for me to have a low-grade fever and my hair is thinning on top of my head (which is really bumming me out!). I also have developed an anxiety disorder. Several months ago, I noticed a brownish patch on one side of my nose. It has since spread over the bridge to the other side of my nose and is looking more red in color. I hasn't spread to my cheeks into the classic butterfly rash, but could this be the start of a malar rash or does it pretty much develop all at once?
Rashes are a frequent topic on lupus boards. I have many but never the classic malar rash. Rashes come and go....look different.....are generally tied to a flare. If you are concerned see a dermatologist.
Meisie, I'm an anti-Ro lupus patient, without secondary Sjogren's. I had years of "subacute cutaneous lupus erythematosus, annular form" (targetlike) rashes, on arms, back & torso. But at time of Dx, I was told that I was also "eligible" for malar and/or discoid (scarring) rashes. And sure enough, I did get a scarring "discoid" on my face, but never a malar.
My drs. warned me that anti-Ro patients can be VERY photosensitive, so I should take extreme precautions until I knew one way or another. If you haven't discussed sun precautions yet with your dr., I hope you do soon.
Did your rheumie do a lip biopsy to confirm Sjogren's? Like you wrote, I understand anti-Ro is seen in Sjogren's, lupus, or both.
Whether the redness on your face might be a malar rash, only your dr. could say. I actually *think* a malar can come on slowly & can last quite a while; but again, I'm just a patient, so those might be good questions to pose. Also, you could ask if low-grade fever & hair thinning are seen in Sjogren's, or whether those are more associated with lupus. I hope you keep posting here. Bye, with warm wishes, Vee
I did not have a lip biopsy but with my labs and dryness (eyes, mouth) the rheumy gave me the diagnosis of Sjogren's. I don't know what else she would want to see to give me a definite on lupus. Guess I won't know - at least from her - just found out she is leaving our community so I will need to find another rheumy. There's only one other rheumatologist here so if I can't get in with him, I will have to do some traveling to find one.
Meisie, as you see in the "stickies", a lupus Dx is built thru blood results, urinalysis, skin findings, & symptoms (both skin and "all other"). It's quite a grab-bag. It can take time, because you can match on these criteria sporadically & over time (as opposed to meeting enough simultaneously). And I've read that milder cases are harder to Dx, which makes sense.
My skin findings helped a lot. In lupus, "immune junk" can build up between dermal/epidermal layers of skin, so I had deep-punch biopsies of lesional skin from upper arms to see if this was happening. Such punches are examined under the microscope. Then a second step, immunofluorescent stain tests, can light up in a unique way if the rash is lupus-specific. But in my case, my rashes were frequent & not subtle, lots of red circles, impossible to ignore.
Are you on any medication for the Sjogren's? Bye for now, Vee
"Deep-punch" biopsies? Eeewww - that doesn't sound good!
The rheumy started me on Lodine for joint pain and it helped a lot but I had to discontinue taking it every day because it was causing weird bruising. She also started me on 400 mg plaquenil/day but I had to back off to 200 mg/day due to the wicked diarrhea it gave me. She said once that problem subsides to slowly work my way back up to 400 mg/day.
Meisie, skin is numbed (only hurts when the block wears off), punch taken, several stitches, then back later to have stitches removed. It's nothing, really. I was a great candidate because of all the rash activity on my upper arms, an easy place to biopsy. Hope you settle into the Plaquenil quickly. Hang in there, Vee
OK - I have a question on another type of rash. After I take a shower, I get a pinkish-red, blotchy rash on my face, neck and chest. It lasts about 15 minutes and then fades. I get it no matter what type of soap or shampoo I use. Could this be lupus-related?