I wanted to come on here to see if anyone else is experiencing the same thing I am. Months ago, I had a recurring low grade fever for about two weeks which led my PCP to do bloodwork on me which came up positive for ANA. He said that this could be due to an infection and they gave me antibiotics. The fever eventually went away but he referred me to see a rheumatologist. I did see a rheumatologist and more bloodwork was done. My ANA was indeed positive as well as my SSA and SSB being elevated. I show no signs or symptoms of lupus and he suggested I may even have Sjorgen's but I don't show signs or symptoms of that also.
I'm not sure what to do because it feels like I am just waiting to see when symptoms pop up. Has anyone else experienced anything like this?
Krystle, hi & welcome. I was positive for SS-A (anti-Ro), but had fever, fatigue, joint pain, pain along the long bones of arms/legs, hair and weight loss, GI & urinary problems, migraines, B-12 anemia, elevated sed rate, depressed WBC, etc. The last symptom to arrive were non-scarring, non-depigmenting targetlike skin lesions on upper arms and back, finally diagnosed as SCLE (subacute cutaneous lupus erythematosus). (The two SCLE rashes have a high correlation with anti-Ro.)
Have you seen the sticky posts (permanent info posts) at the top of the thread list? Including the one contaning "alternative criteria", that lists things seen in people who eventually go on to develop lupus? Also, you could read much more extensive info in various books available at most libraries.
Did your basic bloodwork (CBC, etc.) show any anomalies?
For Sjogren's I think the most definitive test is lip biopsy. For lupus, deep-punch skin biopsy is sometimes done, to look for deposition of "immune junk" that pools between the dermal & epidermal layers of skin; this deposition is a hallmark of lupus.
Symptoms flare and recede in both lupus and Sjogren's: that's just the nature of them both. What did your rheumatologist recommend you do next? For example, many people with anti-Ro are extremely photosensitive... so did he ask how you look & feel after sun exposure? Sending best wishes, Vee
No, I haven't gotten a chance to poke around too much on the forums but I will definitely take a look at that section.
Also, I have to look at my bloodwork again but both PCP and Rheumatologist told me about the ANA, SSA and SSB.
I have also had a biopsy on my cheek because I had a small rash but that was just due to excema and no signs of lupus. I don't have any photosensitivity. Although I don't exhibit signs for lupus or Sjorgen's, I have been diagnosed with Hashimoto's but am not sure if that has anything to do with my abnormal bloodwork and my minor, yet frequent headaches.
Hi, again. I believe Hashimoto's can cause an elevated ANA, but that it wouldn't explain your elevated SS-A and SS-B. Was your ANA really high, did your drs. say? (I've read that Sjogren's in particular causes a very high ANA.)
Re: skin biopsy, did the lab go BEYOND just looking at the punch under the microscope? I ask because I had two deep-punch biopsies on my upper arms that were half-baked (); both skipped a critical second step, immunofluorescent stain tests, important because the stains can identify a rash as lupus-specific, by fluorescing in a linear pattern that's considered virtually diagnostic of lupus. Think this is also known as a lupus band test, or LBT.
For the record, there are two lupus rashes that are heavily associated with anti-Ro (SS-A). First is SCLE annular form (targetlike circles with clear centers), and second is psoriasiform or papulosquamous, which looks a lot like psoriasis (but isn't). Both tend not to itch, scar or depigment. Both tend to be extremely photosensitive.
I suspect mild lupus and/or Sjogren's symptoms could easily overlap with it your pre-existing Hashimoto's. Like fatigue, at the top of the list! Of course I'm just a dumb patient, but I hope this gives you some food for thought and further reading---maybe soon you can write up some pointed questions for your doctors. Sending my best wishes, Vee
I can relate to what you are going through. Over four years ago I started having serious issues with joint pain, low grade fevers, extreme fatigue, mouth ulcers, etc. Lab work was done and I did have a high ANA, positive SSB and SSA, positive Rheumatoid Factor, elevated sed rate, etc. After having Fibromyalgia for several years, this was a surprise.
I had no symptoms of Sjogren's Syndrome at the time so my doctor thought I had Lupus. After changing jobs I started seeing my current rheumatolgist who just labled my illness as a systematic rheumatic condition and was waiting and watching. Over the past two years the Sjogren's symptoms really started to manifest (especially dry eyes) and the Lupus symptoms have, as well.
I know it is frustrating not having all the answers and having to watch and see, but that's all we can seem to do sometimes. Also, trying not to worry can seem near impossible. However, all we can really do is take it a day at a time, educate ourselves on what might or might not develop, and come with a great list of questions every time we see the rheumatologist. I hope you get some answers soon!
Angie, have you received any treatment at all? While I think Krystle just got lab results recently that bear looking into, 4 years of positive labs & symptoms doesn't feel right to me. I don't mean to sound snotty, but do you think your current rheumatologist knows lupus is possible with just anti-Ro and anti-La? (My suburban drs. did NOT know that, which kept me in the soup for many yrs. The metro rheumie I saw next was most uncomplimentary.)
Has your dr. mentioned doing a lip biopsy, in that Sjogren's seems possible? (And people can have both Sjogren's and lupus...)
I'd be tempted to ask WHAT he's watching & waiting for, in that it seems like you have quite a lot going on already. Worried, Vee
I've been under treatment the whole time. My first doctor hastily diagnosed Lupus without my meeting at least four of the criteria (ex. - Rosacea is not a malar rash). Then I had one visit with another rheumatologist who insisted after just one visit that I did not have Lupus and had primary Sjogrens. This is why my current doctor held off on a diagnosis. Eventually the Plaquenil did not work anymore, so I switched to Methotrexate. Ater two years on Methotrexate I am having a real hard summer. I also had hip surgery in March due to synovitis. Today I am starting Cellcept to see if that will work with the pain. Without any treatment I would have been in too much pain to function properly.
She is a rheumatologist at a Lupus Center in a teaching hospital in Boston, so she is up on the latest treatments and is even considering Benlysta if the Cellcept does not work. She listens to me, makes sure that I get my mothly lab work, and has helped me through so much. By the way, my eye doctor did tests for eye dryness and put me on Restasis.
She just did not want to put me through, yet another theory of what I have until she was sure. There were no Sjogren's symptoms in the beginning and now there are. Now I develop that photomorphic light erruption at the beginning of the summer, two summers in a row, and am feeling worse in the sun and heat. It has all come together now and even makes sense to me. It just seems that it is not always an easy path to diagnosis, but my doctor was treating the symptoms and now it seems clear. Hope this makes sense!
Angie, I'm glad you're in expert hands & sorry you're needing different meds!
Where on your body do the suspected PMLE (polymorphic light eruption) lesions appear? I had years of SCLE rashes, the annular (polycyclic) form. In *immature* form, lesions are red, raised papules. The literature describes these immature lesions as *extremely similar to PMLE*!
In *mature* form, those same papules appear, then expand into targetlike circles, then lose circularity as they expand even more. For the first 4 years, my lesions were only the "immature" papules. In year 5, they began expanding into circles. In both stages, lesions favored my upper arms & back.
Only reason I mention this is that the two* SCLE rashes are heavily correlated to anti-Ro. (* The 2nd SCLE rash is SCLE psoriasiform; it looks very different from the annular form.) I can't be in midday sun; like most anti-Ro patients, I'm horribly photosensitive. Sending best wishes, Vee
The rash is on the top of my forearms and I still feel the bumps even though the rash appears to have gone away. I try to cover up my upper arms my forearms are always exposed. I lapsed on putting on sunscreen. Not now. I also where sunhats and carry a parasol when it is really sunny. I noticed in the last two years that my sun sensitivity has increased, so I'm trying to be real careful. It was 101 degrees today in Massachusetts of all places, so I'm inside most of the time.
Angie, of course only a dr. can determine what your summer arm rashes really are, but those two SCLE rashes intrigue me because of the anti-Ro connection. I saw 7+ dermies... and one vet. When dermie #5 told me my targetlike lesions were flea bites, I drove straight to vet, who assured me that flea bites look nothing like what I had. More accurate info from him, and no co-pay! HA! I really hope you get improvement soon. Stay cool, Vee