Published July 12, 2014
by Rachael O'Halloran
Disclaimer: This article is not to be considered medical advice. It is about my personal experience with Sjogren's Syndrome, my symptoms and medications. What is working for me medically doesn't apply to all patients with this disease. Please consult your medical care provider before taking any advice you read on the internet.
Sjogren's is pronounced as "SHOW-grins"
Some of you who follow awordlover on HubPages may have read her hub on Sjogren's Syndrome with its unique screening quiz, which I hope you'll check out. It is a useful tool for those who have mysterious symptoms and no diagnosis yet.
In the comments of her hub, I shared that I was diagnosed with Sjogren's Syndrome in 2008 and that I am managed pretty well with medication. Since my search took quite a few years with a lot of bumps along the way, I thought I'd share my experience with you.
My Sjogren's Is Not Your Sjogren's
By the time we are diagnosed with an autoimmune disease, we have picked up all kinds of medical and mental baggage. It often takes years to get a correct diagnosis. At least, it did for me. Some readers may be able to identify with that.
While it is not true for everyone, medical experts say that people who have one autoimmune disease will often contract another before their lives are over. So it is not unusual to have two or more autoimmune diseases cohabiting in your body at the same time.
I have a pretty specific treatment that works for me and it might not work for everyone else. I know it is tempting to compare because I did it too. I had to remind myself that not everyone with Sjogren's has every symptom on the list and that we all experience symptoms at different levels of intensity.
The Good News And The Bad News
If you have someone in your family with Sjogren's, you're at a higher risk of getting it.
If you have a first or second generation family member with an autoimmune disease, you are at a higher risk of getting some kind of autoimmune disease too, but not necessarily the same one as your relative.
The Sjogren's Syndrome Foundation says there are about 4 million Americans who have Sjogren's. It mostly affects women who are 40 or more years of age and are usually menopausal or post-menopausal. This number has not been updated since 2000 (14 years ago) so you can be sure it is much higher than that now. I think the age should also be lowered because I started out younger than 40 with symptoms.
If you already have your diagnosis, there is always more to learn about this insidious disease and how you can go about treating it with over the counter and prescription medications. It is one of those diseases that can change at the drop of a dime, or it can stay the same for years. It all depends on the person, their lifestyle, their medication plan and what else is going on with them medically.
I'll spare you the origins and history of this disease, who it is named for and all of that. You can find that on any other hub or webpage about Sjogren's because they all go into great detail. This article will address the process of getting my diagnosis and how I now treat my Sjogren's.
Researchers are learning more about Sjogren's all the time.
"Sjögren's syndrome is the main culprit behind dry, irritated eyes, mouth, throat, skin and nose. It is a painful condition that takes an average of 6.5 years to diagnose and can be difficult to treat. Georgia Health Sciences University researchers say learning more about how it develops should improve diagnosis and treatment."
--Georgia Health Sciences University November, 2011
Two Types of Sjogren's Syndrome
1. If you have Sjogren's and no other autoimmune disease, then you have what is called Primary Sjogren's Syndrome.
- Primary Sjogren's is more aggressive and can cause severe dysfunction in the salivary glands, stiffness and swelling, joint pain, rashes, fatigue, dry cough and vaginal dryness.
2. If you do have another autoimmune disease that was diagnosed before or after your Sjogren's, then you have what is called Secondary Sjogren's Syndrome. It doesn't matter which autoimmune disease came first; what matters is the fact that you have more than one.
- Secondary Sjogren's comes with less severe symptoms of dryness of mouth and eyes but it has to fight with other autoimmune symptoms in the body.
- When a patient has two or more autoimmune diseases, it is very difficult for a doctor to diagnose Sjogren's because the symptoms are masked to look like so many other diseases, delaying diagnosis confirmation.
The presence of other medical conditions determines how well a patient gets along with Sjogren's and with their treatment plan.
You don't have to have every symptom on the chart
My General Health
Except for the 1990s when I was in the best of health due to being misdiagnosed a couple of times, I have always been pretty healthy. I've tried to take good care of myself, eat right, get plenty of exercise, and I've always drank lots of water.
Since 2009, most of the time I don't even think about having Sjogren's Syndrome. I don't give it a second thought, except for the couple of minutes I spend taking my medication or using eye drops each time. As soon as I'm done, it is out of my mind. I consider myself lucky that my symptoms are well taken care of with prescription and over the counter medication, exercise, diet, common sense and lots of rest.
I do wish I had been diagnosed sooner though, because it was a very rough road to get to diagnosis and treatment.
Looking back in hindsight, my symptoms were almost right out of the textbook, yet it took years to finally label my disease as Sjogren's. I was given several other diagnoses - Multiple Sclerosis, Lupus, Fibromyalgia - before I was definitely diagnosed with Primary Sjogren's Syndrome.
It was a wonder the doctors didn't kill me with all the medications they gave me for diseases I didn't have.
Restasis vs Artificial Tears
Dry irritated eyes
A Lot Of Misdiagnosis Along The Way
In 1985, I met awordlover (Anne DiGeorge) when we both had our babies in the same Philadelphia hospital. I had just given birth to my last child at age 38. Anne was a little younger, in her early 30's and had her last baby as well. She already had Multiple Sclerosis by that time, for about ten years. Over the two day hospitalization, we complained to each other about how tired we always were and we laughed at our terrible memory and concentration problems.
When she saw me putting eye drops in my eyes many times during those two days, she questioned if I had seen any kind of specialist. I didn't recognize my dryness, fatigue and concentration problems as symptoms of any disease, except being a "dead on her feet Mom" of five kids.
She said it might actually be something more than "busy Mom syndrome." For almost ten years, I all but ignored my symptoms because of taking care of my family, moving around the United States, and running with my children to their activities.
1990 - Moving from Philadelphia to California
By 1990, my oldest son was 23 and my youngest was 5. Usually we rented a house whenever we moved because my husband worked as a consultant for special projects with the federal government. Most of his assignments didn't last more than five years so we moved a lot over the years.
But this time, after one year of renting, we bought a house in California because we loved it there. After everyone was acclimated to new schools and jobs, I went back to work as a nurse at a Los Angeles hospital, working three 12 hour shifts per weekend.
Our health insurance also drastically changed with the move from the East Coast to the West Coast. We'd always had to pay for our family's medical insurance with Aetna or Blue Cross because Joe wasn't directly employed by the US government and we didn't get the great benefits other government employees did.
When I went back to work in late 1990, my health insurance at the hospital was free. But it was also an HMO, something very new to us (and to the rest of the US), requiring referrals for tests and to go to specialists.
Although for years my symptoms were dry eyes, dry mouth and monster-sized mouth ulcers, it was never really much to run to doctors about. Over-the-counter eye drops, a bottle of liquid Anbesol for mouth ulcers and drinking a lot of fluids usually took care of symptoms. In no time at all after we bought our house, I was exhausted because of house hunting, juggling job and taking care of family that it aggravated my symptoms.
Remember me saying that except for the 1990s, I wasn't in the best of health? Actually, I wanted to forget the 1990s altogether.
In 1991, when I was 44, I had a "routine" hysterectomy because of fibroid tumors and I developed a blood clotting problem after surgery that my doctors didn't catch in time so that I had a very small stroke. My brain MRI showed some fuzzy gray spots, but physically I was very lucky because I didn't suffer any outward ill effects.
Menopause kicked in full storm a couple of days after the surgery. I had no idea hot flashes were that hot! I started hormone replacement therapy. I went back to work in three months only to find myself exhausted more than ever and blaming it on going back to work too soon.
I had fatigue and dry eye symptoms and I was having more than the usual type of memory issues - at work, at home, in the store ... everywhere. Actually, I just thought I was feeling my age especially when my joint stiffness worsened. My family doctor thought it was residual from the small stroke. I was in a fix; my old neurologist no longer took my HMO insurance, so I had to find one I liked from their provider list.
Each new neurologist consult repeated old tests and the doctors either gave no diagnosis or a radically different diagnosis from each other - from Lupus to Multiple Sclerosis to Wegener's Granulomatosis, or Fibromyaligia. After doing some research at the library (pre-internet days!), I didn't think any of them matched what was going on with me.
Each doctor put me on steroids for short periods, which took care of some of my symptoms but as soon as the prescription was gone, everything came back again. I was recognizing the signs with each new appointment ... these doctors thought I was a quack patient and that all my symptoms were in my head.
1992 - You Have Lupus
Finally in 1992 at age 45, a Neurologist and a Rheumatologist agreed on one diagnosis -they said my test results all pointed to SLE, Systemic Lupus Erythematosus - Lupus. I wasn't totally convinced because when I compared myself to others, I knew I didn't look like other patients who had Lupus.
On top of a high dose of oral steroids, I was prescribed immunosuppressive and anti-inflammatory medications. After a month, I was switched off prednisone to methotrexate (a stronger steroid) for the joint stiffness and other medications for fatigue and dryness symptoms. I also needed medications for the side effects of all the medications.
Methotrexate is nasty and even though it helped a little, after three years, I stopped taking it because not only had I gained 30 pounds (a side effect of steroids) but my white blood cell count was becoming suspiciously compromised because of the immunosuppressive drugs.
1995 - Michigan and You Have Multiple Sclerosis
In 1995, we moved again, this time to frigid Michigan. We put our California house up for rent because Joe and I thought it would be a good place to live once the last child was out on his own. We still had three living at home, so we rented a house in Michigan for Joe's five year assignment there.
Oh how I wished we had never moved from California. I got worse with the drastic change in weather - dry skin, dry eyes, dry mouth ... dry everything. Prescription eye drops weren't covered on my Michigan HMO and besides, I really didn't see much difference between them and over the counter Visine or Murine eye drops. I couldn't buy enough moisturizer to keep my skin from breaking down and how my joints ached with the cold.
When we got settled in our rented house, I pulled myself up by my bootstraps and applied for a job as a nurse in Detroit. With a new HMO health insurance a month later and my medical records forwarded, I was assigned new specialists who renewed my prescriptions for me. After a few years, either they dropped my plan or I got rid of them. With new neurologists and rheumatologists came new MRI's, spinal taps and blood studies to make sure they were treating me for the right disease.
I really "looked" terrible. In late 1999, added to my fatigue were symptoms of blurry vision, balance problems and occasional foot drop. My dry mouth caused even more swallowing problems and mouth sores than before. I couldn't trust my memory at work to remember simple two and three step duties. I passed off my vision problems as turning 48, holding reading material an arm's length away to be able to see it, and needing reading glasses.
After being treated for Lupus for more than seven years, two more "second opinion" specialists said I didn't have Lupus at all.
I had Multiple Sclerosis. They both said my brain MRI and spinal tap were conclusive. My ANA blood test was positive at 1:280 and the other blood studies jived in. I wanted to make sure they understood that I was told the fuzzy gray spots on my brain MRI were from a small stroke, but they were convinced the spots were from Multiple Sclerosis.
June 2000 - DMD's - Disease Modifying Drugs
In June of 2000, I began the daily injections of DMD's, which my HMO didn't cover. The monthly cost would have bankrupted a Rockefeller. For the first time in my life I had to ask for financial assistance to help pay the $11,000 a month price tag for the medication. My copay was $2,500 per month and the grant from the drug company took care of the rest.
I only got somewhat better on the medication, and I had to take a lot of other drugs for the side effects of the DMD's. My bloodwork was carefully monitored and the drug company and insurance required a lot of MRI's for documentation.
Besides the patients I had in my care, I only knew two people personally that had MS - a nursing co-worker named Jane from California and Anne DiGeorge in Philadelphia. One was confined to a wheelchair and the other one was fired from her job when she couldn't perform her duties any more.
Depression doesn't begin to describe my mental condition. I was 53 years old and worried about how long I'd continue to be employable.
Before (L) and After (R) Treatment For Dry Mouth (Sicca)
Glossary of My Former Autoimmune Medications & Side Effects
In no particular order:
Methotrexate - can be oral or injected. Nausea or vomiting and abnormalities in liver function tests; mouth sores, rash, diarrhea, and abnormalities in blood counts; lung problems, persistent cough or unexplained shortness of breath, slow hair loss, sensitivity of the skin to sunlight
Betaseron - Injected. Flu symptoms after injection, lessens over time; allergic reactions, depression, liver abnormalities, low white blood cells, injection site reactions. No known long term reactions.
Copaxone - Injected. Chest pain, injection site reaction, shortness of breath, palpitations, deep full body flushing (a big hot flash) lasting 15 to 30 minutes and then it passes without treatment. No known long term reactions.
Rebif - Injected. Gives flu symptoms which lessen over time. Injection site reactions, liver abnormalities, depression, allergic reactions, very low red and white blood cell counts.
From the website: (They tell you this at the very bottom of the page after they scared you to death with the side effects of each medication!)
- All of these medications have been shown to reduce the frequency of MS relapses and the development of new lesions. In individual clinical trials comparing a drug versus an inactive placebo treatment, MS attacks were reduced by 28–68 percent by different agents. In the clinical trials, most people were also found to have fewer, smaller, or no new lesions developing within their central nervous system as visible in MRI scans. Some of these medications have also been shown to delay the progression of disability.
October 2000 - The World Wide Web, Massachusetts and Delaware
In October of 2000, we moved from Troy Michigan to Boston Massachusetts and then something wonderful happened.
We got connected to the internet and my life just changed overnight. It is amazing how much the internet has impacted all of our lives now, but in 2000, it was just getting off the ground and becoming available in homes. There weren't thousands of websites yet, much less medical websites but I swear I couldn't stay off my second hand computer.
In November of 2000, I answered an online ad for clerical work on a medical website that turned out to be managed by Anne DiGeorge. I started to work for her part time doing research for medical queries sent to her via email, in addition to working weekends at a Boston hospital. During one of our first phone calls, I mentioned to Anne that I had been mistakenly diagnosed with Lupus in 1992, that it was changed to Multiple Sclerosis in 1995, then I told her what my symptoms were.
Because of her knowledge of autoimmune diseases and herself having Multiple Sclerosis, she said my list of symptoms and test results sure sounded like MS to her. So I stayed on the injections, even though I only felt marginally better. I was able to keep working, and thought maybe it was the drugs helping me to do that.
By June 2005, I had been on DMD drugs for five years. My DMD drug protocol had been changed many times - from Avonex to Betaseron to Copaxone to Rebif. It seemed that every time the drug reps pedaled a new drug to doctors offices, patients were changed over to the new drug. Although the cost was getting a little lower, they still were not affordable for the average person. With the special assistance from the drug company, in Boston I had a copay of $2,000 a month toward the $9,000 monthly bill.
In July 2005, we moved from Massachusetts to New Castle Delaware because Joe accepted a short three year assignment. It was one assignment that he would never complete. I was hired with the Dupont medical network in Wilmington, again with free HMO medical insurance.
The Day My World Changed
At 2AM on January 1, 2007, my husband was hit head on by a driver going in the wrong direction on the Interstate. Two other drivers were killed. Joe had a very severe spinal injury with crushed cervical and lumbar vertebrae and two broken legs. He was comatose and on a ventilator for nearly three months in Intensive Care. I was there night and day when I wasn't working. When he finally came around and was weaned off the ventilator, only then did doctors see the extent of his spinal damage. He was completely paralyzed on his right side, partially on his left side, and unable to speak or swallow even liquids.
In April 2007, my $500,000 HMO hospital benefits had run out and my $250,000 nursing home coverage took over so Joe could be accepted to one of the best spinal injury rehabs in the country in Morris Plains, New Jersey, almost 200 miles from our home in Delaware.
We were dependent on my one income and this rehab had $50 a day copay. I was still paying my medication copay of $2,000 a month. My Delaware HMO said after the $250,000 nursing home benefits ran out, if he remained an inpatient in New Jersey, we were on our own. Because of our income level, savings and retirement accounts, we didn't qualify for any financial assistance for the remainder of the huge medical bills. I was commuting from Delaware to New Jersey every day to be with Joe, still working my 36 hour weekends, working part time for Anne and trying to bring enough money in to keep up with the bills.
By October 2007, we ran through both our savings and retirement fund. I moved our belongings from Southern Delaware to a house rental in Northern New Jersey so I could make a shorter commute to the rehab center. I was able to get hired with a former employer in South Jersey and with my new HMO, all our benefits were reset so Joe could be taken care of without high medical bills. My four oldest children lived in California, Colorado and Michigan. I wanted nothing more than to pack up and go back to California when Joe got better.
2008 - New Jersey, Philadelphia and Sjogren's Syndrome
In January of 2008 my husband was discharged from rehab to come home to live with me in North Jersey. It had been just over a year since his accident. He still required a lot of care and got very frustrated very quickly. To say I was exhausted was an understatement. We still had one son living at home to help out and my HMO kicked in for home care benefits so Joe qualified for nursing assistants three days a week with our $10 a visit copay. Things were getting back to normal at home, but I was starting to come apart at the seams.
I was taking more power naps to address my fatigue in between running for appointments to an Ophthalmologist for dry, gritty eyes, an Ear, Nose and Throat doctor and a Speech Therapist because of my swallowing problems. I sucked on Peppermint Lifesavers a lot when I wasn't drowning my throat with gallons of water.
For someone who was always in good health, I sure was taking a lot of medication and going to a lot of doctors.
Living near Philadelphia, I saw Anne more often now and I still worked for her about 25 hours a week. When Anne and I got together for lunch one day, the look on her face confirmed to me how bad I looked to others. After listening to my schedule of appointments, she said I was defeating myself by doctor hopping because no one doctor got to see me when I was at my best - or at my worse. She said my symptoms were being addressed separately with consults instead of being viewed as part of a larger picture.
She said, "If you say you don't feel any better after all this time on the DMD meds, it doesn't take a brain surgeon to figure it out - it sounds like the diagnosis is wrong."
It was exactly what I had been thinking. I should have talked to her sooner, like way back in 2002 or 2003.
The Facts About Dry Eye
"It Looks Like Sjogren's"
She didn't think I had MS at all and said that what I had, looked like Sjogren's Syndrome. Although I had read about it in passing, I didn't have a lot of the symptoms listed on the charts and so I had dismissed it. I never brought it up to my doctors and they never mentioned it to me. They were too busy looking for all the "regular" diseases. But you know, after being told I had Lupus and then MS, her words weren't that hard to hear.
"But the fuzzy spots on my MRI, they insisted it was MS" I told her.
"Rache, your little CVA is probably where the brain lesions came from. Any doctor you go to now will say you have MS because they are looking at your records, not at you. I'm telling you, these guys look no further than the previous doctor's notes, consults, lab reports and your medication list."
I couldn't believe this. What if she was right? Could I be injecting all that poison in my body for all the wrong reasons?
Between rent, gasoline, copays for Joe's home care and the copay of the MS drugs that I probably didn't even need, I was really stressed financially. When it was time to refill my prescriptions at the end of the month, I convinced myself that I was doing the right thing when I told my neurologist I was going to stop the DMD's.
Okay, so it was a very bad idea, but once I was over the withdrawal part, I knew I would never take those injections again. After reading volumes of information Anne sent me in emails, I agreed with her. I was now 95% sure I had been misdiagnosed first with Lupus, and then with Multiple Sclerosis.
She suggested I change from a Neurologist to a micro-specialist called Rheumatologist-Neurologist, with a sub-specialty in Immunology. I soon learned it was a specialty that had very few doctors and none were listed on my HMO plan. She steered me to Thomas Jefferson Hospital in Philadelphia, and gave me one doctor's name to read up on before making an appointment. I had to be a self pay patient but I didn't care at that point. I needed a doctor who knew what he was doing.
2008 - Finally Finding The Right Doctors ... For Both Of Us
I gave my new doctor a copy of my medical records, including all the reports from previous doctors. He took his time going over everything and giving me a thorough exam. He shook his head, saying he was sorry that I had been at this for so long, going from doctor to doctor all over the country..
Of course he had to order his own tests, more MRI's, and blood work. After two visits, he said he was sure that I had Primary Sjogren's Syndrome, but he still wanted to do a few more tests to make sure I didn't have a second autoimmune disease. I didn't. He started me on medications and within a couple of weeks, I was doing very well.
2009 - Home To California
I loved my new doctor, but in 2009, we were to move again, this time back to our home in California. We gave the tenants living in our house 90 days notice so we could move back in around May. Joe was referred to a visiting German neurologist at Cedars Sinai Hospital in Los Angeles who had great surgical success with his particular spinal injury and agreed to evaluate him. All I had to do was get HMO insurance at a job there, our coverage would be reset and all Joe's care would be paid for again. There was no decision to be made, of course we would move. But I told Joe I wasn't going to California doctors and I wanted to fly back to make my appointments in Philadelphia. We traded off the expense of my old DMD monthly drugs for airfare!
Twenty years of dealing with symptoms
Since 2009, I have been flying back to Philadelphia twice a year for my specialist appointments. After twenty years of doctor shopping, I wasn't giving up this one for the world. Three of our children had moved to the various cities on the East Coast in 2011, so my doctor's appointments in Philadelphia became pleasure trips.
Since starting treatment for Sjogren's, I have had several tweaks of medication but I have to say, I'm doing pretty good. My symptoms are troublesome when I am not following the rules -- an almost gluten free diet, moderate exercise, medication and making time to rest when I need it.
I take Vitamin D3 to protect my bones from the steroids, Glucosamine Chondroitin for joint health, Vitamin A for vision and eye health, Nexium for GERDS, a Disease-Modifying Anti-Rheumatic Drugs (called DMARDs) named Plaquenil, an antidepressant named Prozac, quinine for restless limbs, Vitamin E for dry skin issues, Restasis drops several times a day for the eye grit problem, a monthly steroid infusion as needed and Bayer aspirin for occasional pain and joint discomfort. I stopped taking Rituxan infusions mostly because of the hype about the leukemia and lymphoma side effects.
My bloodwork is right on par now for any active woman of 67 years old. I still have Sjogren's. I just don't dwell on it. I haven't felt this good in years.
My husband met with his new specialist and had successful spinal surgery in December 2009, followed by nearly six months of outpatient rehab which gave him back some mobility. He uses two canes to get around and rests frequently. Since leaving the New Jersey rehab, he takes a special joy in letting people know his brain has always been fully intact and that he doesn't appreciate being treated like an idiot.
Although he gets Social Security Disability, in 2011 Joe went back to work for three months or so. In May 2014, we decided to sell our house in California and move to Alexandria Virginia to be closer to our East Coast children and grandchildren. It was great timing because just when I decided I had worked long enough and to take my Social Security, Joe was asked to work on a special project in Virginia for a few months. We now split our time between Virginia and a little house we bought in a Florida retirement community.
Since 2009, things have been going very well. I have much to be thankful for.
Below is a list of tests that are typically done for Sjogren's Syndrome, although not all the tests are done for each patient. Doctors have their favorites and of course, a patient's symptoms determines which tests are needed.
How long to get diagnosis?
Sjogren's Means Daily Medication
Rose Bengal Test
In No Particular Order, Tests That Can Be Done For Sjogren's Syndrome
1. ANA - Antinuclear Antibodies Test
In most cases another blood test is done first called ELISA which stands for enzyme linked immunosorbent assay and looks for ANA's in the blood. Once found, the ANA test looks for "auto-antibodies" in the blood serum to detect autoimmune diseases for example: SLE - systemic lupus erythematousus, Sjogren's Syndrome, scleroderma, polymyositis, autoimmune hepatitis, psoriatic arthritis, Multiple Sclerosis, Rheumatoid Arthritis, cirrhosis, discoid lupus, juvenile arthritis, and some cancers.
This blood test is done to evaluate patients with signs of connective tissue disease ONLY when the Antinuclear Antibodies test (ANA) is positive, and especially if the patient has symptoms of Sjogren's Syndrome, Systemic Rheumatic Disease or Lupus Erythematosus.(LE)
- It takes about 1 day of laboratory time at the most for your doctor to get the results. It can be a stat order if necessary - usually ordered if a patient is in a flare up.
SS-A/Ro antibodies are mostly seen with connective tissue diseases including Sjogren's, childhood Lupus, neonatal Lupus, rheumatoid arthritis, and with congenital heart block in infants born to mothers with Lupus. This test measures the level of specific Sjogren's syndrome antibodies in the blood and is almost always Sjogren's when it comes out positive.
SS-B/La antibodies are usually seen in about 60 percent of patients with Sjogren's Syndrome and about 15 percent of those with Lupus Erythematosus (LE).
SS-B/La antibodies are usually not detected if there were no SS-A/Ro antibodies found.
- A positive result for SS-A/Ro or SS-B/La antibodies usually is indicative of connective tissue disease, including lupus erythematosus (LE), Sjogren's Syndrome, or rheumatoid arthritis.
3. Salivary gland biopsy
This is a biopsy of the minor salivary gland which is just under the inside of your bottom lip. Sometimes you'll feel them when you run your tongue inside your lip and feel little bumps there. The doctor numbs your bottom lip and makes a small incision on both sides. He takes a sampling of the glands and then sews up the incision. When I had mine, I was sore for a day or so, but that numbing didn't wear off for over a month. This test is for Sjogren's, sarcoidosis and lymphoma, and is best done when you are having symptoms so the doctor can get an idea from the results of how bad your disease is.
4. Schirmer's test
This test with a special dye is used for either dry eyes or very watery eyes to see whether your eyes make enough tears to keep them moist. A negative result here is considered a normal result. A score of 3 or higher is positive for Sjogren's. Most authorities agree that two out of three of the above tests must have a positive result to be Sjogren's Syndrome.
5. Fluorescent eye drop test
This is also a special dye test. The idea is to flush out the dye through the ducts in your nose in two minutes and if it takes longer, it is an abnormal test result.
6. Vitamin A Deficiency
This is a blood test looking for a cause of eye and vision difficulties.
7. Salivary Isotope Test (Parotid Gland Scintigraphy)
This is a nuclear medicine test where a radioactive tracer called technetium 99 is injected into your vein and you sit in front of a camera type scan so it can trace how much and how fast the isotope gets to your salivary glands (which are just under the jaw on both sides of your neck). This first scan is considered a baseline scan to measure against the next part.
About 30 to 45 minutes into the scan, you suck on a sourball or lemon candy so it can get your salivary glands to start watering. The technician takes another scan to compare it to the first part. A radiologist evaluates the results and usually within 24 hours your doctor has the report.
8. Rose Bengal Staining Test
This is an eye test done with a purple stain that looks for damaged epithelial cells as a reason for your lack of tears. Each eye is numbed with anesthetic, then one drop of one percent rose bengal solution is put in the corner of each eye in conjunctival sac. If your doctor thinks you have Conjunctivitis or Keratoconjunctivitis, this is a good diagnostic test. It is also part of the Sjogren's list because it can show the difference between them and Sjogren's. (Photo in sidebar).
If you are taking any kind of hormone therapy, your symptoms will be primarily inactive. Lack of estrogen, on the other hand, can make your symptoms look worse and can skew your test results greatly.
Links For Further Reading
- Sjögren's syndrome - Wikipedia, the free encyclopedia
The history, symptoms, tests, diagnosis and treatment of Sjogren's.
- 13 Types of Sjogren's Fatigue
13 types of fatigue presented by the Sjögren’s Foundation
Sjogren's Syndrome Foundation, Inc.
6707 Democracy Blvd
Bethesda, MD 20817
American Autoimmune Related Diseases Association, Inc.
22100 Gratiot Ave.
Eastpointe, MI 48021
National Sjogren's Syndrome
Svedala, 233 23
Sjögren's Syndrome Association
3155 Rue Hochelaga, Suite 001
Quebec, H1W 1G4
Lupus Society of Alberta
Suite 200, 1301 - 8 St. SW
Calgary Alberta, T2R 1B7
Center for Peripheral Neuropathy
University of Chicago
5841 South Maryland Ave, MC 2030
Chicago, IL 60637
Autoimmune Information Network, Inc.
PO Box 4121
Brick, NJ 08723
European Society for Immunodeficiencies
1-3 rue de Chantepoulet
Geneva, CH 1211
Cogan's Contact Network
PO Box 145
Freehold, NJ 07728-0145
This content is accurate and true to the best of the author’s knowledge and is not meant to substitute for formal and individualized advice from a qualified professional.
© 2014 Rachael O'Halloran
Carrie Lee Night from Northeast United States on May 08, 2020:
Useful hub :) Thank you for sharing this nicely constructed hub :) Have a wonderful week :)
GreenMind Guides from USA on December 25, 2016:
This is a great, well-researched hub. Thanks for sharing your experiences with Sjogren's.
NewLifeOutlook on July 12, 2016:
Wow! What a wonderful, in-depth article. Thank you so much for sharing your personal experience and opening up on a topic not many people know about!
BunnyM on May 28, 2016:
I don't know if you'll get this comment, so long after your article was posted, but I just wanted to tell you how moving and how genuinely helpful it was to read. I'm currently in the process of seeing various doctors in hopes of a diagnosis for my dry eyes and dry mouth (and a few other mysterious symptoms). Although I am desperately hoping that it's something other than Sjogren's Syndrome -- something temporary and not chronic -- I feel more and more certain that it is, in fact, Sjogren's. (My blood tests have been negative and I have not had a lip biopsy, but the doctors have offered no other explanation for my symptoms.)
My doctors reassure me that, even if it's Sjogren's, it can be well-managed. But at this point, I've read so many online posts about different people's experiences with Sjogren's, and so many of them are the worst-case scenario. These accounts have me terrified that I'm going to be immobile with pain and fatigue, useless as a parent, a burden to my young daughter -- with all my teeth rotting away, my brain shrinking and my organs failing.
So it was incredibly reassuring to read your account, as harrowing as some of it was. You have managed to make it seem like living with Sjogren's doesn't always have to be slow torture; you've made it seem like something that can be managed. For someone like me, who has been filled with terror and dread for weeks worrying about my future, this was an incredible gift. I am so grateful that you wrote this. You must be an incredibly strong and resilient person to have gone through all of this and to have emerged with such a positive attitude and so much empathy and compassion for others.
Rachael O'Halloran (author) from United States on December 17, 2014:
Vellur, I"m doing so much better now that I'm on the right protocol. Happy Holidays and Good Health to you also. Thank you for reading and commenting.
Nithya Venkat from Dubai on December 07, 2014:
I have never heard of this before, you have gone through so much and have come out of it all. Thank you for sharing so much information on this, take care. Wishing you a Merry Christmas and many, many years of health, happiness, peace and lots of blessings from God. Take care.
Rachael O'Halloran (author) from United States on September 08, 2014:
#grand old lady
Yes, I'm doing very well now. It was a long ordeal, but now I am on the right medication, follow a sensible diet, and get adequate exercise and rest. Thank you for reading and commenting.
Mona Sabalones Gonzalez from Philippines on September 08, 2014:
Wow, what a lot of treatment you went through before finally learning that you had Sjogren's. Hope you are doing well now.
Rachael O'Halloran (author) from United States on August 22, 2014:
I have been on vacation for the last 2 weeks and I'm just now catching up with the comments on my articles. I apologize for the late response. My daughter-in-law clicked approve on all the legitimate comments and denied all the spammy ones.
A blood test is not the definitive diagnosis and should never be accepted as such. I showed a low ANA for years and when it started going up, along with aggravated symptoms, only then did I become an "interesting patient" to some doctors. But none of them got it right because they were looking for the obvious. I was no help because I had too much on my plate. Once Sjogren's was "suggested" only then did all the results become plausible and it became a reality.
Yes, I've been through a lot. I think some of my disability had a lot to do with delaying diagnosis because doctors don't want to talk to someone they don't believe can understand them. Deafness doesn't mean you are dumb, but some doctors are dumb because they think deafness means the patient is also stupid. I always brought someone with me to appointments - a habit that awordlover got me into back in the late 1980s, and I noticed that doctors would always talk to whomever was with me and not to me. That made me mad. My speech is perfect, you would never know I am deaf, and that literally floors some doctors because this perfectly legible voice comes from a person they have been ignoring and talking around because they are talking to the companion ABOUT the patient. ME! My husband Joe feels that if I had not been deaf that I might have been diagnosed sooner because doctors see one deficit and can't get past it to look for what the patient is seeking care for.
But it is all water under the bridge now and as I said, some days I really feel it and some days I don't even know I have Sjogren's.
If I were you, I'd have the gum biopsy. But WAIT until you are really sick to do it because if you are not having symptoms, the biopsy will give false results and say you are negative for Sjogren's. When you are sick for a while, then get the referral, make the appt for ASAP, do not medicate with anything beforehand and don't overly saturate yourself with fluids. You want to be dry. The biopsy is not a picnic so be prepared for some side effects of numbness and some pain for a while. I hope you are able to find a doctor who can put a name to your symptoms because I know it is not fun going for years without "knowing."
Thank you for commenting and please write to me and let me know how you are doing.
Sparklea from Upstate New York on August 12, 2014:
RachaelOhalloran; This piece has blown me away! Kudos to you for taking time to research and provide this very valuable information. I have been tested for Sjogren's MANY times over the years because I have a positive ANA - low, but positive...and when I saw my rheumatologist this year for dry mouth, he said my glands were swollen. But all he does is a blood test which turns out negative every time. So would that mean I do NOT have it? He has mentioned the biopsy from the gum on occasion, and my oral surgeon cannot do it without his order...but nothing else has ever been done except the blood test.
I am VERY familiar with the autoimmune information, and I DO get frustrated because blood tests are ALL normal...yet sometimes my face is very red for no reason...and I guess we all tend to have aches and pains. I do have osteoarthritis too.
This being said I cannot BELIEVE all you have been through for such a very long time. You are not only a trooper, and I so admire your stamina...but your taking the time to research this is so very admirable on your part. This hub will benefit many...you should submit it to some magazines also. God bless and thank you. Sparklea :)
Rachael O'Halloran (author) from United States on August 01, 2014:
#Eiddwen, Thanks for reading through my saga and for commenting. :)
Eiddwen from Wales on August 01, 2014:
Very interesting;well informed and will benfit many I am sure.
Rachael O'Halloran (author) from United States on July 29, 2014:
Sometimes it is in the knowing that makes things easier to handle. Although he knows he will never be able to work at a full time job again, Joe is back to work on special projects on a part time basis. He's doing fine. I'm managed very well with medications and lifestyle changes. Thank you for reading and commenting.
ologsinquito from USA on July 29, 2014:
You've covered this so well. I'm sorry to hear about all that you've been through. Thankfully, your husband survived the accident. At least you know what you're dealing with now. I wish you and your husband well.
Rachael O'Halloran (author) from United States on July 22, 2014:
#teaches12345, If anyone is searching, I hope that by reading this, it gives them something to consider, even if Sjogren's ends up being ruled out. It is better to know than to wonder. Thank you for reading and voting.
Dianna Mendez on July 20, 2014:
This is the first I have heard of this syndrome. I can see how many people would not realize they had it. Your sharing from personal experience is going to bring this to a higher awareness and help others. Vote up++
Rachael O'Halloran (author) from United States on July 18, 2014:
That is great news - for you and anyone reading this who is told they need to consider it. I have some issues in the morning when I wake up, but warm cloths usually take care of it and I'm good for the rest of the day with just drops. Thanks for coming back to reply. :)
Cynthianne Neighbors on July 18, 2014:
They do help!! When I got them, I was having to pry my eyelids open every morning and one time had to to go the emergency room to get my eyelids opened. I got my implants the next week. I have had them for years and although I still use drops now and then, it is now and then instead of constantly.
Rachael O'Halloran (author) from United States on July 17, 2014:
Wow! I haven't gotten to that point yet. I'm glad the tear duct implant surgery was offered to you and I hope you are doing well. For me, so far so good with the eye drop medications. Thanks for reading and commenting.
Cynthianne Neighbors on July 17, 2014:
Very good article!! I have tear duct implants due to Sjogren's though I was only put on medication once, then taken off due to adverse reaction.
Rachael O'Halloran (author) from United States on July 17, 2014:
Documenting took some time, to go through the years trying to get events in the right sequence, checking with Joe and some of the children. They thought I was nuts asking so many questions about dates and where we were living. lol Thanks for your comment. I took a peek at your hubs and found a great phrase finder tool. I'm glad to follow you as well.
Thanks for reading and for your comment.
RTalloni on July 17, 2014:
Thank you for sharing your journey so others can learn about coping with doctors and the medical system, and for sharing what you have learned for the benefit of other patients and their families.
If for no other reason, documenting experiences as you have here helped you keep up with what was happening in the difficult circumstances you faced but doing so and posting the record is invaluable to people who are struggling to get to the bottom of health problems they face.
Ann Carr from SW England on July 17, 2014:
You're welcome. I'm glad you're both doing well.
Rachael O'Halloran (author) from United States on July 16, 2014:
Thank you for your kind words. I have a good support in my husband Joe. By the time my youngest child started school, my oldest was 23 so my older children were extremely helpful when I had to run to appointments etc.
My hope is that one reader questions their doctor before they start any kind of long term medication (especially if it is injected into the body), get more consultations just to make sure, don't stop at two doctors like I did when they said I had MS.
After this experience, now I tell my kids and my friends this - if the medicine makes you feel bad, it is not good medicine because medicine is supposed to make you feel better.
I'm doing well these days and Joe is doing fantastic. lol
Thank you for reading, your comment and your good wishes,
Ann Carr from SW England on July 16, 2014:
This was an absolutely fascinating read. You are remarkable! How on earth some people put a brave face on such misfortune I don't know! Most people would have crumpled under such strains, I think.
Your comprehensive information is so useful for other sufferers or for those who suspect they have been misdiagnosed. It could save others years of taking the wrong medication.
I hope you and your husband continue to sustain your good days and that life treats you with more respect; you certainly deserve it!
My best wishes to both of you.
Rachael O'Halloran (author) from United States on July 14, 2014:
Thanks, we are doing very well now, but it was a rough few years though. lol Thanks for reading, commenting and voting.
breakfastpop on July 14, 2014:
I am so sorry you had to go through such hell. Getting wrong diagnosis after wrong diagnosis does not surprise me at all. I say trust your gut. No one knows your body better than you, so if something is telling you that what you are being told feels "off", it probably is. I am happy to hear that you and your husband are going great. Voted up, useful, interesting and awesome.
Rachael O'Halloran (author) from United States on July 13, 2014:
#vkwok, I hope if readers ever know someone or develop symptoms themselves that they will refer back to this hub or awordlover's screening quiz. And I did find a good doctor. He's the best and worth the airfare to make appointments. lol
It is not surprising that you haven't heard of it. It's not on the top 10 and doctors don't even look for it when they are testing patients. Thanks for reading.
I'm 67, so I've got 10 years on you and it is unlikely we would have met up. About getting fat, it can happen to the best of us. You are lucky at age 57 and still mobile and in good health that you can still do something about it. If you want to, that is. :)
Nadine May from Cape Town, Western Cape, South Africa on July 13, 2014:
Wow what a story. I have never heard of this Sjogren's Syndrome. Many thanks for sharing.
Victor W. Kwok from Hawaii on July 13, 2014:
A lot of people can benefit from this hub, Rachael. I'm glad that you found a doctor who can help you cope. Good fortune.
Shauna L Bowling from Central Florida on July 13, 2014:
Rachael, it's unlikely we crossed paths, but it's still interesting to me. We moved from CA to PA in 1963, then to Philly 2 or three years later. Moved to Jersey in 1971 and I moved to Florida in 1976.
I'll keep my eyes out for other symptoms. So far, at age 57 I'm not on any kind of medication. My main problem is I've gotten fat. And I don't like that!
Rachael O'Halloran (author) from United States on July 13, 2014:
I'm meeting a lot of people who have lived in the same areas I have, at almost the same times and it's very interesting to me. We could have passed each other in a store or they could have been a patient in one of the hospitals I worked in and we'd never know it.
Restasis works for me morning, afternoon and night. It takes care of the dry eyes and that's all I care about really. The other meds are excellent so that I don't even know I have a disease. That's why I always say I'm in good health. I don't even think about Sjogren's, I feel that good.
Anne used to say that the transformation in me was a full 360 turnaround because of how I was before and then after. I have photos of those years, and Ilook really horrible. Those pictures do not go in the family photo albums. They are in a shoebox under the bed! lol If my kids weren't in them, I would have thrown the pictures away years ago.
About your dry eyes, as long as you don't have any other issues, it is probably true that you don't have Sjogren's. But if you start to see other symptoms from the chart popping up with you, get treatment sooner, because the longer it is put off, the more meds you have to take to get adjusted, then it is a regular dose after that.
We will get together soon. I'm taking Joe and Ashley back to Virginia on Monday, they've been here since July 4th. Then Cam and I will be back in Florida for a while. Thanks for reading and commenting,
Shauna L Bowling from Central Florida on July 13, 2014:
Wow, Rachael, you and your husband have been thru the medical red tape wringer! I've never heard of Sjogrens Syndrome. Several years ago I was diagnosed with dry eye. My eye doctor prescribed Restasis and I hated it. It made my eyes redder than they already were. Red whites next to blue irises is not a pretty picture! I ended up giving the unused tubes to a co-worker. I've since found an over-the-counter eye drop that works wonders. It's called Rohto (the last o is raised above the other letters). I don't have to keep in in the fridge to avoid the initial burning sensation that Visine and Murine gave me. I put one drop in each eye every morning after my shower and sometimes again later in the day if my eyes feel irritated. I love it!
I find it interesting that our lives have crossed the country in so many like places. We lived in California when my mom divorced my father. I was 6. We moved to York, PA where my mom had some family (she's one of ten). There she met my dad and we moved to Philly, which is where he's from. My sister was born in Lankanau hospital. Just before I entered high school we moved to South Jersey. Now we're in Florida, although my family is in South Florida and I'm in Central Florida.
I'm glad you're feeling better. I just wish it hadn't taken years of misdiagnoses and thousands of dollars to finally get the right treatment. You're a very strong woman, my friend!
Rachael O'Halloran (author) from United States on July 13, 2014:
Yours is a very painful problem and I am so glad you have gotten some relief with the surgery, which I am sure was painful in itself.
I look forward to reading your article when you write it. While writing this hub, it took me all the way through the experiences all over again, reliving every step.
I put this off for months because of that.
Finally I just spent about two days getting it written down, making sure I got it all right, then researching the tests because they have changed since I had mine in 2008.
Good luck to you and thank you for stopping by to read my hub.
Marcelle Bell on July 13, 2014:
Thanks for sharing your journey with this awful disease. I too was diagnosed with a rare disease early last year called Trigeminal Neuralgia. Fortunately, I was able to have an invasive "brain surgery" that fixed the problem, hopefully for good, but my time suffering with the disease and medicines before was just horrible. I plan also to write a hub on my experience in hope to help others. This is a well-written, very informative hub and I am sure you are helping others with Sjogren's Syndrome.
Rachael O'Halloran (author) from United States on July 12, 2014:
Sjogren's Syndrome is not the first one a doctor thinks about, at least none of mine did. They were too busy looking for all the "regular" diseases instead of something "not so regular."
I'm glad to see that my article has reached some readers who never heard of it and I hope if anyone is suffering with symptoms that they will at least ask their doctors if Sjogren's Syndrome is a possibility.
The tests are not very painful but not pleasant either, but when you see the tests for other diseases, they are pretty easy to get through, all this considered.
The medicine is much easier to deal with than when I was taking the shots they said I needed for all those years. I too am glad to finally be on the right course. Thank you for reading and commenting.
travmaj from australia on July 12, 2014:
What a journey you have been on to reach the eventual diagnosis. I am impressed that you didn't give up. The medications can be challenging too especially when they are prescribed for another disorder. All this plus the stress of moving and your husband's accident. Racheal, I'm so pleased to read of your eventual correct diagnosis and all is now under control. I admit I had never heard of this disorder until you presented this. Thank you
Rachael O'Halloran (author) from United States on July 12, 2014:
It was a very tough road, but one of the worst parts for me to deal with was anger -- anger at taking medications for something I didn't have that had such a high cost which we really couldn't afford at a time when my husband's care was costing a fortune.
Whenever I questioned doctors about Lupus or MS medications, emphatically asking "Are you sure?" they always said yes.
It just goes to show that doctors do not know everything. It took the eye of a friend to make a suggestion and offer the name of a good doctor for me to get off the 8 year treadmill I was on. She's gone now, but I still have him as my doctor. To her, I will always be grateful. Thank you for reading and commenting.
Linda Crampton from British Columbia, Canada on July 12, 2014:
I'm so sorry that you had to endure such horrible problems for so long, Rachel. It's wonderful that you've found a doctor that helps you, but it would have been great if it had happened much sooner! I'm sure that your hub will be very useful for a lot of people.
Rachael O'Halloran (author) from United States on July 12, 2014:
#DDE, Thanks for reading such a long article that wasn't meant to be that long. lol
Devika Primić from Dubrovnik, Croatia on July 12, 2014:
Interesting and informative. You did such a wonderful lay out on this hub. A great way to let one know about Sjogren's Syndrome.
Rachael O'Halloran (author) from United States on July 12, 2014:
This article ended up being a real project to write, going through years of memories that were difficult for my husband and I. Yes, the hub was about Sjogren's Syndrome, but for so many with the disease, it's about the journey too.
There are many people who have been misdiagnosed with Lupus or Multiple Sclerosis and they really have Sjogren's which requires much less toxic drugs than the others. And there are still many more others that are searching for an answer. Sjogren's just might be it.
Thank you for reading and for your praise.
Bill Holland from Olympia, WA on July 12, 2014:
Well this was a new one for me. I have never heard of this. I love that you are writing about it. Raising awareness is a huge step in de-mystifying it, and articles like this one help others and lessen their concerns. Well done my friend.