It's been a little while since I posted here last. To recap; I'm a 25 year old female. After almost 6 months of tests, repeat tests, and mris, my diagnosis has finally been narrowed down to an "auto-immune process." And further narrowed to lupus or sjorgen's syndrome. I started seeing a rheumy last month in Boston who has narrowed things down to my repeat ANA testing coming back positive.
MY inital ANA titer was only 1:160 with a speckled pattern. My RF was a tad high, and my SSA-RO was grossly high. Hence the referral. They tested me again in Boston as they claimed to have a more specific testing technique done by hand, blahblah. My ANA titer came back at 1:1280 with a speckled & homogeneous pattern. I emailed my doctor when the results came back to ask his opinion based on that. . His response in short was that they focus more on the ELISA rather than the number and pattern. And that since ONLY the SSA was positive, it's not indictive of lupus and my symptoms aren't "specific enough."
To me, my symptoms are quite specific and have been all along.
headaches, EXTREME fatigue, constant joint pain & muscle pain, nausea, depression, anxiety, difficulty concentrating, some memory loss, dry skin/scalp especially, I do have a SLIGHT malar butterfly rash, but everytime i see this doctor, it's faded down and not as evident I suppose, I've recently gotten a few photos to show him otherwise. Photosensitivity, some joint swelling, some mouth sores.
I have the Schirmer test scheduled for the 10th to measure my tear production. I have never noticed an issue with dry eyes or dry mouth. So I personally don't think I have Sjorgen's. I'm not sure what to do. I'm feeling exasperated. I trust that the doctor knows what he's doing, but I'm curious as to why he thinks the numbers/pattern don't matter in the diagnosis and why he seems fairly certain my symptoms are not "specific" to lupus. Any feedback would be greatly appreciated.
OH; he did start me on Plaquenil about a month ago.. No imporvement as of yet.
Actually, it sounds like Sjogren's to me. I was diagnosed with Sjogren's a year ago based off of very similar symptoms (extreme fatigue, joint pain and swelling, hair loss, IBS symptoms, muscle pain, dry/flaky skin, mouth sores, nose bleeds, migraines that are increasing in frequency and a long list of other things). My initial blood work was highly suggestive of Sjogren's - ANA greater than or equal to 1:1280 speckled, SS-A greater than 8.0 (the maximum the lab counts), RF very high, elevated ESR and total proteins.
I was also anemic at the time, but iron supplements have helped.
In the past year, my Sjogren's has continued to worsen despite Plaquenil. I have developed what seems like asthma that is difficult to control, but may be early lung disease, the fatigue is often debilitating, and the joint pain when I flare is particularly bad in my legs (especially knees but all the joints in my legs). My muscles can hurt to the touch like I'm bruised all over and at the same time feel like I've walked a hundred flights of stairs. I have developed leukopenia, and get recurrent bronchitis. My potassium levels are also dipping below normal now, so we're watching kidney function.
So the point of all this - Sjogren's isn't just a dry eye/dry mouth AI disease. It is a systemic disease that causes many of the same problems as the other connective tissue diseases, and all of your symptoms and lab work sound very familiar to me.
kadedoll, I seem to fall into a DIFFERENT yet similar anti-Ro group, those dx'ed with lupus but not Sjogren's. My symptoms were close to yours but not identical. e.g., I also had severe IBS and cystitis. But my "best symptom" (in sense of aiding Dx) was photosensitive annular (targetlike) non-scarring lesions, upper arms/back. This rash stumped my local dermatologists for years. It was finally dx'ed by a teaching hospital dermatopathologist as SCLE (subacute cutaneous lupus erythematosus): immunofluorescent stain tests done on deep-punch skin biopsies "lit up" in the linear bands considered diagnostic of lupus. Also, I met more than 4 ACR criteria for SLE.
Despite my positive anti-Ro, I wasn't specifically tested for Sjogren's, meaning no lip biopsy, Dry Schirmer's, or the like. Not sure why... Maybe because I didn't report overly dry eyes/mouth? Or maybe more because I didn't have the very high ANA that's typically seen in Sjogren's?
Where I differ from what "Sjogren's" posted: my RF is negative. And where I match: I've also had elevated ESR, leukopenia (depressed WBC), and potassium depletion (probably due, at least partially, to severe IBS). In fact, my IBS was so bad that I'd be hospitalized for invasive tests & rehydration. My migraines were show-stoppers, esp. bad when the IBS was raging.
I'm certainly no doctor, but I suspect your dr. has unvoiced thoughts, else why would he have prescribed Plaquenil? But because people with anti-Ro can have lupus, Sjogren's, or BOTH, I acan see the sense in his calling for Dry Schimer's & lip biopsy. Why? Because knowing which you have, or if you have both, helps both dr. & you keep an eye on the "right" things.
Out of curiosity, have you read the sticky post [there permanent info posts at the top of the thread list], the one listing so-called "alternative criteria"? It describes things common in the early lives of people who later develop lupus. I matched on almost all of those.
I was told that Plaquenil is slow-building & can take upwards of 4-6 months to reach its full effect. Anyhow, I hope above makes some sense, and that you find out more soon. Hang in there! Sending warm wishes, Vee
P.S. "Sjogren's", sending warm wishes to you, too! For sure, as you wrote, Sjogren's is also systemic. Did you have rashes? Are you photosensitive? I'm curious because I bet we "anti-Ro's" share a lot---yet I don't know all the tools & tests used to distinguish between the two. I guess that's a 64k question here, huh? Take good care, V.
Hi VeeJ, yes I am photosensitive. I don't get severe rashes (thank goodness!) but will get more like "facial flushing" that does resemble a malar rash but goes away within a few hours. What's even worse than sunlight for me (maybe because I avoid the sun as much as possible?) is fluorescent lights! Fluorescent lights make me SO sick. Dizzy, nauseated, headaches, sore throat, muscle and joint pain ... before I was diagnosed, I would go to a store with bright fluorescent lights and within 30 minutes would be convinced I was coming down with some sort of bug. I told my rheumatologist I'm allergic to Wal-Mart - ha!
I agree - I think SS-A positivity is associated with a lot of the same symptoms between Sjogren's and Lupus patients. My rheumatologist explained that Sjogren's and Lupus are often very similar diseases with the BIG difference being the potential for SLE to progress quickly to nephritis. With Sjogren's, we're much more likely to develop lung disease, but it's usually not as quick as with nephritis in SLE so we often have time to catch it and slow its progression.
Thank you very much for the warm wishes - you are always so sweet and helpful in your advice to everyone!
Oh, kadedoll, I forgot to mention - like VeeJ said, Plaquenil can take a long time to reach its maximum benefit. It took four or five months before it helped with the joint swelling in my fingers, but it did help with the joint swelling and it did bring down my ESR to well within the normal range - so I do believe it helps, it just takes a while :-)
Thanks for ya'lls feedback. I was admitted to the hospital Thursday after I gave in the pain and decided I should be seen. There was a severe lack of communication at the hospital, they never contacted my rheumy. However, the doctors were in agreement that i was experiencing a "flare" related to my "auto-immune process". From what my rheumotologist told me though, Sjorgen's doesn't have flares. Lupus does. So I'm even more confused now.
I sent another message to my rheumy to get his opinion. I believe he wants me to come in sooner to be seen as well.
Sjogren's definitely flares. I was in a horrible flare a month ago that took a steroid shot and six weeks of a combination of anti-inflammatories and pain medication to control. Perhaps seeking a second opinion from a rheumatologist more knowledgable about Sjogren's would be helpful.