Q: My doctor diagnosed Sjogren's on this basis: ANA 1:2560 speckled and 1:80 nucleolar, anti-SSA/ro > 8, soreness in many joints, and moderate fatigue. The joint soreness is pretty mild; It disturbs my sleep but usually doesn't bother me much during the day. Other than a dry nose and crusty eyes - which could be due to pollen allergies - I don't have the hallmark eye or mouth symptoms of Sjogren's. Is it possible I will never develop these, and if so, is it really Sjogren's? Or are these probably going to come later? A: Probably no way to know for sure. The high levels of ANA autoantibodies, nucleolar pattern (even if low), and SSA without SSB...I would follow prospectively for mild SLE as well. Allergies don't usually cause dry nose, unless taking alot of drying antihistamines. The "crusty eye" could be bletharitis (might want to check with your eye doc). Consider discussing with your physician the pro/con of taking Plaquenil for 3-6 mo's. May slow down the autoimmune activity,... Read More →
Sjögrens Forum
Living Well With SjögrensDo I Have Sjögrens?
If your eyes feel gritty and you need to blink more than you used to, if you need more drinks of water through the day because your mouth feels like a desert, and/or your skin feels dry itchy, burning, cracked; if you feel a profound fatigue most of the time, it’s a possibility. You needn’t have all, or even most of these symptoms; One or more can lead your doctor to a diagnosis. The trouble is that in the early stages, the symptoms come and go and are often non-specific, until later when the disorder becomes acute. Some symptoms of Sjögrens are:
- Dizziness
- Tiredness
- Generally ill with low-grade fever
- Itching, gritty eyes
- Difficulty swallowing
- Loss of sense of taste
- Severe dental cavities
- Hoarseness
- Joint pain or swelling
- Swollen glands
In spite of the fact that Sjögrens (Sjs) is the cause of suffering for 4 to 5 million Americans, it is not on the tip of all Doctor’s tongues, If your doctor evades your questions and you think that Sjs could be the cause of your troubles, keep looking for a Doctor who has others like you in their practice. Then, the necessary tests to make an objective diagnosis can be performed. Check out our Resources Page for a list of institutions where you can get more information. And remember, the earlier you have this checked out by your Doctor, the better.
Below, you can find some of the most recent questions answered by Dr. Carteron, you can find more by searching the menu on the far right. Questions and Answers are organized by topic, or you can ask Dr. Carteron a question by visiting this page.
Intervene Early with Autoimmunity
Filed under: From The Doctor, Life With Sjögrens, Symptoms
Figuring Out Your Symptoms
Filed under: From The Doctor, Life With Sjögrens, Symptoms, Welcome to Sjögrens Forum
Q: I have been diagonsed with sjogrens about 2 years ago, i had a lip biopsy to confirm. I have a gland at the base of my neck right above the colar bone that is swollen and hurts, the gland behind my left ear is always swollen, i have gained weight and cannot lose it. I have a large lump at the base of the back of my neck right on the spinal cord not sure if it is just muscle or something else. I drink constantly nothing helps. I have tmg and chewing gum makes it worse so doing that to decrese dry mouth is out of the question. I have severe nausea take carafate 4 times a day and protoxin 2 times a day. I have issues with cysts thoughout my body, ovaires, breast, and know im getting red bumps on my body that look like pimples but are not. Could those be lupus marks? (I have secondary lupus ) I have been diagnosed with gastro issues, ibs etc. I have had 2 polyps removed from my colon. One was cancerous but removed in time. I have a cyst on my vocal cords... Read More →
Do I have Sjogrens?
Filed under: From The Doctor, Life With Sjögrens, Symptoms, Tests, Welcome to Sjögrens Forum
Q: I have had symptoms of autoimmunity without positive test results for 20 years (except 1 positive anti-RNP 10 years ago). I have the gene for AS and have severe back pain on/off for years without a positive AS diagnosis plus I am female. I have had neurologic issues for years mimicking MS, but never have been diagnosed with MS. The physicians always say it is just an autoimmune thing (UCTD). I recently developed dry eyes (have had for years) AND a dry mouth...so dry I cannot swallow food and am miserable. I also have a very sore and swollen big toe and thumb, on the right side of the body, although all the weakness and neuralgia is on my left side. My rheumatologist is not helping me at all...keeps telling me I have fibromyalgia. I recently participated in the Sjogren's Registry at UCSF and am awaiting results. My serology so far is not positive for Sjogrens, but I have a low RBC and lymphocyte count. My physician tells me that is from fighting infections over the years, but this... Read More →
Autoimmune-like Symptoms and Plaquenil
Filed under: From The Doctor, Life With Sjögrens, Medications, Symptoms, Tests
Q: I'm wondering, is it possible to have Sjogren's Syndrome without positive SSA/SSB or lip biopsy? I have had extensive blood tests for other conditions, all negative. I'm a 23 year old female, have an ANA of 1:80, dry eyes (positive slit lamp and schirmer), dry mouth (saliva flow test 0.2mls -under 1.5mls= dry mouth), joint pain, stiffness, mild swelling/boggy joints, Raynaud's, mouth and nose ulcers, hair loss, hives, petechiae, nail pitting- all confirmed by a rheumatologist. But because my blood tests/biopsy is negative, I cannot get a diagnosis. My rheumatologist says it's not autoimmune. I've been on Plaquenil for 6 months and all my symptoms have improved (except dry mouth and Raynaud's), my mouth and nose ulcers have been the most significant (from 10-15 to 1). My flares are a lot shorter, my rashes have disappeared, I'm no where near as fatigued, my joints are not as sore and stiff. I also improve dramatically on Prednisone taper packs. Could I still have Sjogren's or another... Read More →
Positive ANA and Plaquenil
Filed under: From The Doctor, Life With Sjögrens, Medications, Symptoms, Tests
Q: I have been experiencing extreme fatigue for about 5 years. I have Hashimoto's and take synthroid. Still experiencing the extreme fatigue along with multiple symptoms of lupus and sjogren's. I have a positive ANA, but all other blood work is normal. My family doctor sent me to a rheumatologist. This particular rheumatologist also treated my brother for lupus, RA and scleraderma. My brother passed away 2 years ago from respiratory failure. My father and another brother have raynaud syndrome. Doctor thinks that although bloodwork is normal, symptoms and family history warrant a lupus/sjogrens overlap diagnose and prescribed Placquinal. I am feeling uncertain that this is a good diagnosis because the bloodwork is normal (all but the positive ANA). Please let me know what you think. Thank you for your time. A: Strong family history of autoimmunity, positive ANA, and fatigue may have prompted the recommended trial of Plaquenil. A trial of 3 months on Plaquenil could tell... Read More →
Sjogrens and Amyloid
Filed under: From The Doctor, Life With Sjögrens, Symptoms, Tests
Q: Could you tell us about any association between amyloid and Sjogren's? Five years ago, I had a lump on my shin biopsied and it was a nodular cutaneous amyloid (AL). I was then tested for systemic amyloidosis, which was negative. Two years later, the Sjogren's was diagnosed. I have heard there is a link between amyloids and SS. A: Sjs has been associated with nodular cutaneous amyloid. If you look under April 2010 Speech on the right hand side of the blog, and then under the Skin tab, you will see some info on this. In general, any chronic inflammatory process can trigger the development of amyloid formation. In my experience, it is not often seen in the setting of Sjs. dr c Read More →
ANA and Following Your Symptoms
Filed under: From The Doctor, Life With Sjögrens, Symptoms
Q: I am 50yrs old; was dx'd w/sjogren's at age 40 ,SSA positive. I have had blood tests since then that were ANA negative. My symptoms continue and vary from year to year - much worse lately. Should I have another ANA profile? Does a negative ANA mean that I no longer have Sjogren's, even if I still have symptoms. Symptoms now are localized itching and pain right thigh cyclic starts with itching then pain and swelling then numbness etc. for about 2 months now, some rash associated with this during the itch cycle. I am positive HSV II, 25 yrs ago. My memory is so bad that it is interfering with my job, I am forgetting to put orders in for my pts. I need help and feel though that maybe I'm just somatic or crazy. Thanks for your time. A: Autoantibodies can fluctuate. Symptoms are the main thing to follow. In an individual patient, the antibody titers can track with the symptoms. However, in some patients antibody titers can be high, and pt does not experience... Read More →
Value of a Diagnosis?
Q: Thank you so much for hosting this informative and helpful forum. I have had moderate dry eyes for several years, becoming severe in the last 6 months, and moderate dry mouth. GERD and cough set in simultaneously with the dry mouth. My opthamologist advised I be evaluated for Sjs after two Schirmer's tests of less than 5. I do not have the fatigue and muscle/joint pain. My blood work was all within normal ranges, with the exception of elevated creatinine. My PCP says no evidence of Sjs and will not refer me for any further screening or for evaluation by a rheumatologist. She will retest my blood on a yearly basis. I'm afraid to wait that long for fear of damage if I indeed have Sjs but am roadblocked within the system. Does the disease progress slowly enough to wait this long or would you advise more aggressive action and do you have any suggestions. A: Dry eyes can be uncomfortable and may lead to corneal ulcerations. Dry mouth can be uncomfortable, increase risk of... Read More →
Organ Donation and Autoimmunity
Q: My ANA titer is 1:160 My ss-a and ss-b is > 8 ANA pattern is positive and speckled. My lip biopsy was negative and I do not have other moisture related symptoms. I am also negative for lupus. I have dry eyes and I am on Rhestasis eye drops. I do have joint pain. I am a potential kidney donor for my brother. Now that I have an autoimmune disease, nephrologists are concerned about me as a donor. They do not want me to be the donor any more. I would love to help my brother. Any thoughts? Is it possible that I may develop lupus? Thank you Dr. C A: Having an autoimmune disease is an exclusion criteria for most organ donations in US. I suspect they will not make an exception at this time. With a positive SSA and SSB with a speckled ANA, dry eyes, and joint pain - seems most consistent with Primary Sjogren's. More recent classification criteria require either positive SSA/SSB antibodies OR positive lip bx. Probably, only a small chance that SLE would develop later, but once one... Read More →
Inconclusive Diagnosis?
Q: I have been recently diagnosed with SS. My blood tests were positive for SSA and SSB. But, my lip biopsy came back negative. I do have dry drys and no dry mouth or other symptoms related to moisture. I am 43 years old and I am having some peri menopausal symptoms. I have some joint pain. Do I have SS or is it inconclusive. Thank you so much for taking the time to answer my question. A: From a clinical perspective, it is unusual to have SSA/SSB antibodies. It does suggest autoimmunity or at least a predisposition to autoimmunity. Therefore, a "negative" lip box would not exclude Sjs. There could have beven clues of inflammation or autoimmunity on the box and still read out as neg. The current classification criteria that are used for entering Sjogren's patients into clinical trials allows for Either SSA/SSB antibodies OR a positive lip box (Focus Score > or = to 1.0, plus other symptomsentered accepted into a trial. www.ncbi.nlm.nih.gov/pubmed12006334 .... Known as American-European... Read More →
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