Was the Dx of Sjogren's based on a bloodwork finding of positive for SS-A &/or SS-B autoantibodies? If so, these can be associated with Sjogren's OR with a "subset" of lupus called "subacute cutaneous LE" (SCLE).
Sjogren's can appear "standalone" or in conjunction with lupus.
I'm NOT a dr., by the way---no medical training whatsoever. I was Dx'ed with SCLE by a teaching hospital rheumie 4-1/2 years ago, based on skin biopsies of a recurrent circular nonscarring skin rash.
My bloodwork was clean, but the drs. had expected the SS-A antibody to turn up (not anti-ds-DNA, anti-Sm, etc.) IF ANY antibody turned up. My odds of positive SS-A were 70/30, they told me; but I fell in the 30% that remain negative. The Dx was based on my numerous skin biopsies lighting up under immunofluorescent testing.
I may not be explaining this very well...! There are two well-known hardcovers, one by a Dr. Lahita and one by a Dr. Wallace, that you see in many bookstores & libraries. You could sneak a peek at what either of these drs. write about Sjogren's---or browse on it for more info.
I hope whatever is found stays mild & that you get treatment & advice that helps you to improve. Give a holler whenever you want! Sincerely, Vee
I have an appt in a hour I didn't want to wait till Friday to get answers. I hope to have more information soon. I DON'T have any of the dry issues that I have read about so I'm lost. I really don't know what the test said all they did is call and say I tested + and to come in???????????????????????? I have a list of questions to ask and I want a copy of my lab work when I leave so maybe I can start to look into it as well. Thanks for the info I just don't think it's Sjogren's syndrome based on anything I read but I guess blood work would know better than me???? I'll post soon as I can what I find out. Thank You again.
the test is the SSB it was 1.48. But they also found a "Complement Componet C4C was Not normal and he's concerned so I just had more blood taken. If it comes back the same I have to go to someone else. ANYONE understand what this is?
"Complement levels", tested in in bloodwork, are often depressed in lupus patients; thus the finding of depressed levels supports a Dx of systemic lupus, in cases where the "4 of 11" criteria are met. (I'm not sure if in & of itself, it is counted as "one criteria met".)
Per Dr. Wallace's hardcover, low readings of complements C3, C4 and CH50 imply active inflammation---and are also useful in following disease activity (meaning the levels wax & wane as flares arrive and recede).
I just double-checked on when SS-B (anti-La) tends to be found: usually ALSO with SS-A (anti-Ro). Did you also see it coming out positive on your bloodwork?
Do you ever get skin rashes? If so, what do they look like?
I can talk more on SCLE---if what you find out today makes you want to know more about that particular subset of lupus. I'll watch for your updates & follow your lead, OK?
Meanwhile, best wishes to you! Thinking of you, Vee
Well first off he thinks it may not be lupus and may be primary Sjogren's. The SSA was Negative and the SSB was Positive. I hate and don't mean to sound bad but I want to know what the matter and work on it from there. He just seems to find more things wrong that can't be fixed. I have never had a rash of any kind. I'll take any infor I can get. Thanks for your help!
I'm not sure what *I'd* make of what you've learned so far, either.
This whole process is indeed VERY confusing for most of us, alas. As I said, my bloodwork stayed clean, except for anemia. Oh, and extremely high Epstein-Barr levels (EBV), which are often seen in lupus but are not considered "diagnostic". But I had that darned rash for years.
By the way, my rash didn't even look like a true rash for 4 years. Instead, it looked like mosquito bites---big red welts---but didn't itch. Those appeared about every 3 months, for a total of about 4 years. Then those same bumps started morphing into red circles with clear centers, like someone was stamping my skin with a cookie cutter. (But there is also a second rash typical of SCLE, and it looks somewhat like psoriasis. Both are distinct from the SLE butterfly rash & the scarring discoid rashes seen in DLE.)
What about your other so-called "clinical symptoms"? You said NO to dry mouth/eyes.
What about your LIFETIME health history? Many lupus patients have early histories going back years, of odd stuff. e.g., I started very young: respiratory problems, pneumonia, encephalitis (or so they thought at the time), pain along long bones (shins & arms, with elevated ESR), "bullous" rashes (blistery). In my 20's, migraine-like headaches and horrible IBS (irritable bowel). In my 30's, worsening IBS, chronis cystitis, urinary stones. Final phase was fatigue, joint pain, lower back misery, conjunctivitis, numerous UTI's, tingling up & down my arms, and that odd circular rash.
The gold standard for your initial rheumie appts. includes a LIFELONG medical history. Once one of the lupus criteria is met, that one should be checked off permanently, in ink, not pencil, so to speak.
Another tack completely: were you were recently on some sort of medication that may have triggered what is called drug-induced lupus?
Feel free to write back on anything that catches your eye---or that none of us have discussed yet.
In a moment of inspiration ( ), I just browsed on anti-La (same thing as SS-B antibody). I encourage you to do the same, as I cannot post actual links due to site rules. And, naturally, info found browsing isn't definitive---we need our own doctors to do the hard work...
Anyway, highlights of findings: SS-B is usually found along with SS-A. You confirmed earlier that your SS-A (anti-Ro) was negative. However, one medically oriented site said that "occasionally" anti-La is indeed found all on its own.
Also, beyond primary & secondary Sjogrens and lupus, anti-La is sometimes seen in rheumatoid arthritis and also scleroderma patients.
I bet your dr. ran all sorts of tests for all sorts of autoantibodies, though. You can probably tell from a copy of the bloodwork that's come back, then by posing questions to your dr.
The way this all got started was I have had pain in my back and neck for what feels like forever. I have bone spurs and disk problems. I woke up the Wed before Thanksgiving and I was not able to move hardly at all. I demanded something be tested and I didn't want anymore pain pills I wanted an answer. I had blood drawn that day and a positive ANA so I was sent out. The rest is what you know so far.
My past is, Osteoporosis for 3 years and I'm 36, Thyroid Meds for about 15 yrs, I have had carpal tunnel sugary on both hands, and many female operations. I had a hysterectomy in 91 due to fibroids and pre cancer cells. I have over all been healthy never even having chicken pox! I just want them to get rid of the pain and exhaustion I have all the time, I'm to tired to sleep.
The Meds he gave me yesterday was Cymbalta it's been approved to use for chronic pain but it was bad for me. He asked me to take it once again at bedtime and let him know. I'm not a big pill person I take Soma for my neck and if it's really bad a 1/2 a vicodin and that's all.
Thanks for everything I can't tell you how much it means to me that you have tried to help.
I know only one other woman who had the same SCLE rash I did. (There are lots more, of course, but I don't know them personally.)
Anyway, her biggest problems, pre-rash, were joint problems, including SPURS---both shoulders and BOTH elbows, I think. She'd had multiple surgeries before ever getting the rash. She tested positive for ANA, anti-Ro, and anti-La---and, eventually, she became positive for antiphospholipid syndrome, too. She took big painkillers for years---was truly in misery.
Both she & I also have plenty of osteoporosis. I forgot that one! (Duuuuh.) I've been on Fosamax for several years now. No one could figure out why I kept losing ground. Now that I know more, I'd guess years of on/off inflammation didn't exactly help.
Anyway, I hope this dr. can push this to enough conclusions to get you onto something that helps you systemically but is lighter on the side effects---like Plaquenil---which he'd only do if it were appropriate, of course...
But I speak the truth when I say that it has really helped me; I feel as though I have a safety net under me now, both due to the medication and to having a truly excellent rheumie watching over me.
I hope you keep at it, Gingerleah, until you get onto something that helps you. It does sound to me that your dr. is making real headway with testing and evaluating the results---and getting you closer to some treatment soon. Hope so!
Give a holler any time you want. And hang tough, OK? from Vee (P.S. When you said that you are too tired to sleep, I know exactly what you mean. I've had that same problem and described it in the very same words. I sympathize.)
I've been off for a few days so I just saw your postings. VeeJ knows far more about Lupus than I do although I am learning quickly. I have many aches and pains also with no apparent bone problem. As a matter of fact my bone density test that was done in Sept showed that I have very strong bones. I am 54 , but more to the point, I have also been on synthroid for 6 years. The test was because prolonged use of thyroid replacement can cause osteopenia and/or osteoarthritis, loss of bone, and bone spurs. I believe U mentioned being on thyroid meds for 15 years. Perhaps you should discuss the possibility of taking fosamax with your Dr. as well. Just a thought. The last thing any of us needs is brittle bones if we can avoid it.
Hope you feel better soon.
Merry Christmas and May God Bless Us All
Hi Gingerleah, I haven't been on here for awhile but...
The + Sjogren's post caught my eye as I am 50 & just recently diagnosed with Sjogren's despite no positive SSA or SSB antibodies. I did a lot of research on it and as many as 30% of those with Sjogren's do not have the postive SSA or SSB antibodies and tho most do have the dry eyes and/or mouth-throat, that too can be absent. As in Lupus, each individual's case is as variable as each individual and it can manifest in many different ways. (by the way - also as many as 50% of Lupus patients also have concurrent Sjogren's) Sjogren's causes drying of the body's tissues so virtually any organ including the skin, eyes, mouth, digestive system, lungs, and all the other organ's can be involved very much the same way as in Lupus. Again just depends upon the individual.
I also have extensive cervical dengerative disease (spurs,formiinal narrowing, bulging discs, abnormal curviture, etc.) I also have Hashimoto's and Fibromyalgia, Interstitial Cystitis (very painful when flaring!) & osteoarthritis and numerous white matter brain lesions (made docs think I had MS for a long time but after 3 spinals & numerous other tests ruled that out!) and I also have a seizure disorder and severe constipation which Sjogren's can cause due to the drying effect. As you probably already know - very often multiple autoimmune diseases run concurrently.
I just looked up Sjogren's on the web and also Sjogren's Syndrome Support Groups. (the latter will lead you to a support board for Sjogren's) Sjogren's is often misdiagnosed as Lupus and even MS but again often runs concurrently with either.
I sure wish they had a separate board topic for Sjogren's as it is often treated differently than lupus but after researching I found that it can be every bit as serious and debilitating as Lupus. In fact, my eyes are so severely dry that I now have corneal scarring which has just recently begun to be treated with immune suppressor eye drops but if that doesn't work, the plugging of my tear drainage ducts is next. Now I also am still strongly suspected to have lupus due to a very high positive ANA count (>2560) but so far I have none of the other subset of antibodies that most docs want to see before giving a lupus diagnosis (which to me in my case seems a little off as I have 7 of the 11 criteria for lupus - pleurisy bouts, photosensitivity, positive ANA, chronic anemia, neurological problems [seizure disorder tho mild), malar blush, can't remember other one without looking but... there it is) Plus I've read that often when you have concurrent autoimmune disease and especially a very high ANA count that the subset of anitbodies is often masked and besides - again - many people never develop the subset antibodies.
I know the EXTREME FRUSTRATION that goes along with all the other stuff we have to suffer yet alone have to deal with so many docs and so much time before they will see what is SO OBVIOUS! Arrrgggggggggghhhh
I'm not your doctor(s) and haven't seen your blood tests results and just plain ole don't know your case, so certainly cannot tell you what you do & don't have! But I hope this helps some. And as with me, I hope you find some definitive answers soon even tho that is too often not the case - instead often it takes years to do that.. =(
Take care - MERRY CHRISTMAS and a good holiday to you & yours! =)