Road to Sjogren’s Diagnosis was Exhausting

Endless, unrelenting fatigue and sore muscles were the symptoms that first had me seeking help from the doctor, followed by joint pain not long after. I began discussing these complaints with my family doctor in the early 1990s. At the time I had three young children at home; I worked full-time, and was a volunteer involved with my children’s extra-curricular activities.

Although these symptoms started mildly, they became a source of concern as they continued to escalate in severity despite my healthy lifestyle. I did not drink or smoke, slept really well for eight hours per night, ate nutritious meals, and got regular exercise. Still I did not feel well. My doctor told me I was a busy mom, and hence my fatigue and soreness. He did a few blood tests to ensure my iron levels, B12, and the basics were all okay, all came back normal. He said I did not have Fibromyalgia, nor did I have chronic fatigue. I believed him, but I also knew I was tired and sore all the time. Something was not right.

In desperation to get relief I went to physiotherapy. I told the therapist about my soreness and fatigue and asked if she could possibly provide treatments that might be helpful. After listening carefully, she asked numerous questions, finally ending with, “Have you ever been tested for Lupus?” I explained I had requested testing for autoimmune connective tissue diseases but the doctor assured me I did not have Lupus, or Rheumatoid Arthritis, which by this time was my biggest fear. She told me to go back and ask again.

I did, and he again refused. He assured me he believed I had the symptoms, he did not think I was imagining them (so he told me to my face but I wonder if perhaps behind my back he did think I was), however the symptoms were of no concern. Maybe to him they were not, but they sure were to me. Finally he sent me to an internal medicine specialist, I found out in hindsight he wrote a letter to my family physician saying I was just depressed. By this time, he was right, I was becoming depressed because I knew there was something wrong yet he was making me feel like I didn’t know my own body and what was normal for me to feel.

So, because of what the physiotherapist had said, I sought out a different doctor at a clinic I had never been to. He listened, and then said he’d like to run numerous blood tests before we discussed the possibilities further. A couple lab tests came back positive; he set up a referral for me with a Rheumatologist immediately.

The first appointment with the Rheumatologist was rather brief, he did check my joints, and assured me I did not have Rheumatoid Arthritis, that I had great range of motion and strength, and most importantly no swelling. Most of the rest of the appointment was spent with him asking me questions about my family health history as well as my own. He asked me about my work and home life. I honestly think because I was still doing all my regular activities he dismissed the possibility of anything being seriously wrong. In fact, he said so. He assured me I was perfectly healthy, had nothing to worry about, and by all means I should continue to do all I had been doing. “But”, he said “I will just run a few more highly specialized tests to be sure, but go home and don’t worry, I’m sure they will be fine.”

Two weeks later, he called me and said he needed to see me at his office again, three hours away in the closest city to where I live. This time he did a very thorough examination, starting oddly, I thought at the time, with my mouth. After the physical exam, he told me I had Sjogren’s Syndrome. Both the SS-A and SS-B antibodies were found in my blood along with positive ANA and RF. I definitely had Sjogren’s Syndrome. He explained it was nothing to worry about. I was thrilled. I really did have something wrong with me; I had not been imagining it. He explained Sjogren’s was nothing I really needed to be too concerned about, except staying out of the sun as the SS-A antibodies were linked to sun-sensitivity that could trigger further disease activity. I heeded his advice, was fastidious with the use of sunblock and avoided the sun during peak hours.

Little did I know at the time, he, like many other Rheumatologists did not know much about Sjogren’s. I was excited to have a name for what I had been suffering with, since it was now May 2002, just weeks before my 40th birthday. Approximately ten years had passed since I had begun mentioning the fatigue and pain I had. I remember telling my long time family doctor, “I could go to sleep anywhere, anytime, and sleep and sleep and sleep, all I need to do is lie down.”

Recently the Sjogren’s syndrome Foundation has acknowledged not just dry eye and mouth as “hallmark symptoms”, but fatigue and joint pain as well. May I join numerous other Sjogren’s patients in saying: FINALLY!

In upcoming posts I will explain how the fatigue and joint / muscle pain has affected my life, as well as the best advice a Rheumatologist ever gave me.

To learn more about the diagnosis of Sjogren’s and the 13 types of fatigue experienced click on the following links:

Multiple Tests Required to Diagnose Sjogren’s

13 Types of Fatigue Sjogren’s Patients Experience

Sjogren’s Quickie: Dry Eyes Q&A

Writing a 500 word blog post each day is perhaps a bit much for me…more on Sjogren’s fatigue another day when I am not so – you guessed it – tired. So, in between longer posts I will answer questions, or post a mini-blog.

I promised to answer the questions I was asked a couple of days ago regarding Sjogren’s and my eyes, so here you go:

Does it come on with age?

I am not sure if the person meant Sjogren’s in general or the dry eye issue specifically. Overwhelmingly Sjogren’s affects women, less than 10% of those afflicted are male. And 2/3rds of Sjogren’s patients are over the age of 60 at diagnosis. It used to take over ten years for diagnosis on average (that has been brought to below five years now), so average age at diagnosis may not tell the entire story, if it took someone more than ten years to get the diagnosis. Though the majority of patients are older women, Sjogren’s can affect anyone of any age, including young children. I believe I had Sjogren’s already as a teenager, yet I was not diagnosed until the age of forty.

As far as the eyes specifically, each patient is unique in their constellation of symptoms and the onset of each, but typically dry eye is extremely common. In fact, in a recent study in the USA 92% of Sjogren’s patients had dry eye as a symptom, the highest incidence of any of the symptoms – tied with dry mouth. It is considered one of what they refer to as “hallmark symptoms” of Sjogren’s, because it is the most common.

Are the eye drops, gels, ointments, etc covered by your health plan?

We have two different health plans (which we pay for ourselves since my husband is self-employed) and neither cover any of my eye drops or ointment, not even those prescribed by optometrist / ophthalmologist. The lack of coverage for the over-the-counter products used by Sjogren’s patients is a major complaint. It is similar to diabetics having to pay for blood glucose testing strips; they are “essential” yet not covered by health insurance (at least not in my locale).

Does it affect daily vision?

Yes, it can and it does simply by reason of a dry eye being an irritated eye. If you have ever had light dust blow in your eye while outside, that is similar to the feeling of a very dry eye, hence the importance of eye drops, gels, ointments, etc. Some patients even wear special goggles at night, or in the house during daytime, in an attempt to preserve any moisture in their eyes.

If you prep your eyes for the night before you go to sleep, what happens if you wake up to use bathroom or you need to get up during night?

I just do same routine as in morning – gentle rub of lid to protect cornea- go to bathroom – put more drops / ointment in after. I know my way to bathroom in bedroom well enough in dark, and fortunately I don’t often wake up to use bathroom after I am asleep. When my eyes are “gooped up” I can still sort of see, somewhat like through fogged up ski goggles. My vision is very blurry, but I’m able to make it to bathroom as I have no “hazards” on route. And the goop doesn’t last entire night, which sounds like a good thing but actually it is not because sometimes my eyes get so dry during the night I actually wake up because I can feel the lid sticking to cornea, pulling on it.

Honestly, at this time my eye regime is quite simple compared to that of many Sjogren’s patients. Other types of “remedies” include: artificial tear inserts, a prescription medication – Restasis, tear duct (punctual) plugs, moisture shields, etc. There is also something called “serum tears” which is not yet mainstream, being produced only in select laboratories. Serum tears are produced from the patient’s own blood, with the red blood cells and clotting factors removed, then bottled. If you would like to learn more about Sjogren’s and dry eye here is a link below to get you started:

Dry Eye Info from the Sjogren’s Syndrome Foundation

Sjogren’s: Nuisance or Big Deal?

I have been thinking a lot about whether to write about Sjogren’s this month, wondering if perhaps the people who know me already knew enough about Sjogren’s. If people were wanting to know more they could just Google and get plenty of information that way, especially if searching for the Sjogren’s Syndrome Foundation or Sjogren’s Canada. Another reason for my uncertainty was because I didn’t want my blog to become focused solely on Sjogren’s.

I suspect some readers may be thinking I write about my own experiences with illness to garner attention or sympathy. Many people, including some health professionals, believe Sjogren’s is just “not that big of a deal”. Often people tell me I could have a disease much worse than Sjogren’s. That is true. Are there worse diseases to have? Of course; ALS comes to mind first off, but there are many others. I currently have people I love being treated for metastasized cancer; others hospitalized with other autoimmune illnesses fighting courageous battles to regain some semblance of health. I understand the reality of more severe illness, but I also want people to be aware that Sjogren’s is not a simple, relatively benign disease, just a nuisance.

Several years ago a study was done comparing quality of life for patients of various chronic and / or progressive diseases – Sjogren’s was on par with Multiple Sclerosis for impact on day to day life. Using eye drops is a mere inconvenience compared to many other aspects of the disease. Sjogren’s can progress to affect organs such as the liver and the lungs. Many of the treatments for Sjogren’s and related complications are chemotherapy and biologic drugs, “heavy hitters”, also used for cancer treatment or to prevent rejection after organ transplants. (It should be noted that there currently exists no specific treatment protocol for Sjogren’s as there is for MS or RA.)

Yesterday after blogging about one specific and minute part of my Sjogren’s journey, my eye care ritual, I realize I do need to continue to write about Sjogren’s. Not just the facts and “bones” of what it is as can be found on many medical websites, but the human experience of my journey. I can tell you from my brief time in a Sjogren’s on-line support group, though sharing the same disease and many of the same symptoms, every patient has a unique combination of symptoms and treatment.

Thank you to those who read yesterday’s blog post and made comments, or asked questions on my Facebook page, you have shown me there is still more for me to tell about Sjogren’s. If you look in one of a very few books about Sjogren’s, or on-line, you can quickly discover what tests they can do when looking at your eyes, and some possible treatments. From the responses I received yesterday, I realized yes, a book can tell you Sjogren’s patients use eye-drops daily, but that doesn’t really tell you what that actually means day-to-day. Over the next month I hope to help you understand what it is like for me to live with this chronic, incurable, progressive disease.

Click on text below to view brief video:
Excellent 3 minute TV News Interview with a Patient + Dr.

I wish it was just an April Fool’s joke….

Waking this morning, my first thought before even opening my eyes was: what day is it today? Which was quickly followed by Saturday – April 1st – April Fool’s Day – also the first day of Sjogren’s Awareness Month.

I was then awake enough to roll over and open my eyes. But before opening my eyes each morning, I first must, ever so gently, rub each of my closed eyelids with a finger. Massaging lightly over the entire surface of my closed eyelid allows it to delicately detach any part of the lid that might be stuck to my cornea due to night time dryness. To most, this would seem a ridiculous and unnecessary activity prior to getting out of bed, however it is crucial for me. After numerous painful rips and damage to my cornea due to dry eyes caused by Sjogren’s Syndrome, I finally remember never to just pop my eyes open upon waking.

Immediately after getting my eyelids open, I reach over for the eye drops on the night table plopping a couple drops into each eye. I do this with a great deal of care as well, not because it is an intricate procedure but because eye drops are so damn expensive they might as well be liquid gold so I dare not waste a single drop with poor aim.

After putting the drops in, my vision appears as though clouded due to light fog permeating the house. There is no fog, and my vision is fine, but the drops I use first thing in morning are to replace the lipid layer in my eye which several years ago the optometrist told me was nearly non-existent. The drops look like milk, and contain lipids which most simplistically are fats, vitamins, and other things that help preserve eye surface health. While I wait for the foggy white vision to dissipate, I sip on a bit of water to quench my dry mouth, and do gentle restorative yoga while still cozy in bed.

Throughout the day I replenish and refresh my eyes a multitude of times with another type of drop which is even more expensive but is lighter and within a few blinks does not cloud my vision. Before going to bed at night I coat my eyes with an ointment prescribed by a specialist which I need to prevent cornea rips during sleep. After the ointment is in and has coated my eye surface, I add a couple drops in each eye of yet another type of eye drop this one a thick gel. I have become fastidious regarding my night rituals, since as you can imagine once my eyes are “gooped up” for the night, all other activities requiring vision must cease.

So why, you may ask, am I telling you about what I do to my eyes? Well, my realization it was both April Fool’s Day and the start of Sjogren’s Awareness Month, also had me wondering what if Sjogren’s was all just a big joke (albeit a perverse, nasty mean one)? How wonderful to wake one morning, maybe even today, to discover it had all been a bad, bad dream. I knew that to be sheer fanciful thinking; I didn’t take the chance to pop my eyelids wide open, risking a tear. It did give me pause for thought though – how would my life be different if I didn’t have Sjogren’s? I can only imagine, but for this month instead of thinking of “what might have been”, I will share with you my “what is”.

P.S. Obviously this website is hosted/shows time on the other side of the world from me, as I see the date as already tomorrow. Time flies fast enough, I don’t like them showing me today is already over when it is’t where I live, and isn’t that all that counts? 🙂

World Sjogren’s Day – Saturday July 23rd!

In an effort to increase local awareness of Sjogren’s among medical professionals in my own community, I prepared the following letter which I plan to deliver next week to local physicians, dentists, nurse practitioners, and optometrists. If you have Sjogren’s and would like to copy and paste any portion of this letter for similar purposes please do so. Thank you to Dr. S. Schafer for permission to use her statistics re: Breast Cancer, and the story comparing them to Sjogren’s at her medical presentation.

Dear Medical Professionals:

Saturday, July 23rd was World Sjogren’s Day, a day set aside to promote awareness of Sjogren’s Syndrome. I was diagnosed with Sjogren’s in 2002. The typical responses I have heard from medical professionals when I tell them I have Sjogren’s have been:

“I have never heard of that, what is it?”

“Show what? Can you spell it so I can do a search?”

“Oh that’s nothing; it’s just dry eyes and dry mouth.”

“Venus Williams has that, right? She still plays competitive tennis so it’s not that bad.”

Though Sjogren’s is one of the most commonly occurring connective tissue autoimmune diseases it gets little mention in medical school lecture theatres. It is rarely diagnosed until several years, sometimes decades, after onset. Sjogren’s , like Lupus, can present with a myriad of symptoms varying from patient to patient, eluding even the most skilled diagnostician. Blood tests for antibodies do not always come back positive especially in early stages of the disease.

As a physician who has Sjogren’s herself was prepping for her most recent Sjogren’s presentation for medical residents, she ran across breast cancer stats. In the US, the 2016 estimate of patients living with breast cancer or a history of breast cancer is 2.8 million. People diagnosed with Sjogren’s are estimated at 3-4 million plus. Both diseases mostly (but not 100 percent) impact women. Both have overall survival rate of approximately 90 percent, or on the other side of the coin, 10 percent mortality directly from the disease. Apparently the medical residents were quite stunned to hear about these comparable statistics. However when it comes to public education and awareness, Sjogren’s lags far behind.

It is my hope you will take time to read through the enclosed information sheets provided by the Sjogren’s Foundation, sharing the facts about Sjogren’s with your colleagues and staff.

If you would like to read a medical text about the diagnosis and treatment of Sjogren’s, I would recommend “The Sjogren’s Book – 4th edition” edited by Daniel J. Wallace, MD.

To find out more about the recent development and dissemination of the first USA Clinical Practice Guidelines for Sjögren’s, contact the SSF office at 1-800-475-6473 or visit their website: http://www.sjogrens.org

If you are curious about my personal experience with Sjogren’s, along with several related diagnoses that followed, please feel free to contact me at xxx-xxx-xxxx or via e-mail: suemw3@mail.com, or visit my blog: http://www.wantonwordflirt.com and click on “Sjogren’s”.  I welcome discussion, feedback or questions from medical professionals or patients – let’s learn together.

Thank you.
Suzanne

P.S. Why July 23rd? World Sjögren’s Day was created to commemorate the birthday of Dr. Henrik Sjögren, the Swedish ophthalmologist who discovered Sjögren’s in 1933.

Sjogrens Fact Sheet

 

My Mom’s Surprising Diagnosis

Today is the last day of Celiac Disease awareness month. Though I have known of celiac disease for most of my life, it was only recently and unexpectedly a family member was diagnosed. Celiac Disease is yet another condition in the huge family of autoimmune diseases, one that many people consider rare though it is more common than people suspect. Like a host of other autoimmune disorders it is not always diagnosed expediently.

Celiac disease is not to be confused with gluten-sensitivity, or choosing to eat gluten-free as a lifestyle choice. Not adhering to a strict Celiac diet can result in life-threatening consequences for an individual diagnosed. Even a few molecules of gluten can cause harm to a person with Celiac Disease. Yes, I do mean a few molecules!

My Mom was recently diagnosed with Celiac Disease at the age of 75! Yes, 75. In hindsight she probably had it for years, possibly decades yet neither she nor any of her doctors suspected she might have it. Her diagnosis came somewhat by chance, through a series of circumstances that thankfully provided her with the opportunity for testing.

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(Mom and I – Christmas 2015)

Almost two years ago Mom had a FIT screening (a test which looks for fecal blood) which came back positive. Though she did not verbalize it, I am sure like everyone else who receives such a result she thought “oh no, colon cancer”. The fact she comes from as she calls it “a cancer family” did nothing to alleviate her fears. Once she told me about it, I reassured her it was possibly a false positive result. I also reminded her the test was a screening tool, and not necessarily an indicator of a serious issue. She was aware she would need a colonoscopy to follow-up on the test. Something she absolutely was not enchanted with.

I had recently had a colonoscopy done myself, by a local doctor who now only does gastroenterology scopes. Other than the prep which involves doing the Mexican two-step back and forth to the toilet all evening and night before the procedure, I assured her the procedure itself was a breeze. I remember her sarcastic reply of “Yah, sure.” I insisted I was not lying and explained she would not require general anesthetic rather she would receive efficient new sedation drugs that would have her feeling like she went out and back awake in seconds, with no nausea of the type she was prone to from anesthetic in the past. I told her to request the same doctor as I had since I had such a good experience, so she did.

Besides the FIT screening, the other reason for Mom’s concern was that she had begun to have more and more frequent bowel troubles. Often waking very early in the morning to have to have what she refers to as an “evacuation”. Sometimes this would occur days in a row with no seeming cause such as a flu virus, food borne illness or food poisoning. Naturally she became more and more vigilant about what she was eating. She started to have an aversion to travelling very far or in early mornings if no comfortable washroom available on route.

I had discussed my Mom’s on-going issues with a friend at yoga who eats gluten and dairy-free. She told me that I must tell my Mom to have her doctor check her for celiac disease. I assured her I would. Mom did ask her doctor about it and he said “No, you do NOT have Celiac Disease”. And if I recall correctly he also said he didn’t think she had it because she was not “malnourished”. My Mom has never been overweight, or underweight, always a normal healthy weight. Her diet also exemplary.

So Mom did have her colonoscopy. Immediately afterwards the gastro doc came to speak to us and he told her the bowel looked fine, no appearance of cancer. There was no visible reason in her bowel for her frequent trips to the bathroom. He then told her that she should be checked for Celiac Disease with the screening blood test called tTG-IgA. He explained that if that test came back positive, she would require an upper scope at which time small biopsies would be taken to determine a definitive diagnosis. He emphasized she must continue to eat gluten until both the blood test and scope / biopsies were done.

Imagine my Mom’s surprise when the blood test didn’t just come back positive, but extremely high positive. It was multiples and multiples beyond a normal result,approximately 100x greater than a negative value.There was little question that Celiac Disease was the reason for my Mom’s increasing digestive distress. Negative is less than 4, 4-10 is a weak positive, and greater than 10 is positive.

So, Mom returned to the hospital where I live to see the same Gastro doc again for an upper scope and the biopsy of small intestine. When she woke up, the doc came to her bedside with photos showing the damage to the villi in her small intestine. Celiac disease damage was evident in her small intestine, biopsy results later confirmed it for certain.

On the way back to my house we stopped at the store to buy some gluten-free items and Mom began eating gluten-free that very day. Within mere days she noticed a difference in how she felt and the frequency of her pre-dawn bathroom trips diminished. There is no cure for Celiac Disease but with vigilance to a gluten-free diet it can be controlled. There have been times when she has had recurrences of her intestinal distress, which she chalks up to eating something possibly contaminated with or unknowingly containing gluten, but overall she is vastly improved.

Ironically over the years my parents traveled to many countries overseas, with my Mom vigilant about what she ate. She would be frustrated as she was always the one who was careful not to eat fruits, vegetables, and especially anything uncooked such as salads that could be contaminated. She watched others eat everything in sight, while she ate her “safe” foods – breads and pastas – hoping to avoid emergency bathroom trips while on bus, car, or river cruise excursions. How ironic she said she was actually against her knowledge eating the absolutely worst foods for her body.

Mom is also a phenomenal bread maker and once she retired she made all her bread homemade, rich in whole grains thinking she had improved her diet even more.

They say when you know better, you do better. My Mom sure has. I’d be lying if I said that she doesn’t miss some foods she used to love, but can no longer eat nor find comparable substitutes – such as her own whole-wheat flax bread or festive fruit bread. She has educated herself well from various sources, including becoming a member of the Canadian Celiac Association, and joining an on-line forum for individuals with Celiac Disease to share resources, information and support.

I certainly hope now that Mom’s doctor knows better he will do better too. He was taken aback by her diagnosis. Instead of Mom just being upset by his pronouncement that she absolutely did not have Celiac Disease, she took the opportunity to educate him bringing in a list of symptoms often experienced by those with Celiac Disease, with all the ones she experienced highlighted. Mom was diagnosed with osteoporosis years ago, which I had always found odd since she had always been active doing weight-bearing activities, and a consumer of dairy all her life. We will never know for sure but it could be a result of her being an undiagnosed Celiac, osteoporosis is but one symptom.

For more information on diagnosis, symptoms, and living with Celiac Disease seek out your local Celiac Associations or visit these links as a starting point:

http://www.mayomedicallaboratories.com/test-catalog/Clinical+and+Interpretive/82587

http://www.celiac.ca

http://www.hopkinsmedicine.org/healthlibrary/conditions/digestive_disorders/celiac_disease_85,P00361/

Remember if you believe you have Celiac Disease and your doctor does not believe it is possible, do not be afraid to educate yourself so you may have a more informed discussion, as well as the ability to advocate for yourself if need be. I wish you well.

Sjogren’s Awareness: So, how did I get it?

This week a friend asked me how people get Sjogren’s Syndrome. Where Sjogren’s comes from is a good question. My first thought in response to the question would be: from Hell! I suspect other Sjogren’s patients, especially those who suffer with systemic symptoms and organ involvement would agree.

Personally I have no idea how I got Sjogren’s; medical scientists are still searching for the definitive answer to that question themselves. My friend asked if it was genetic, bacterial or viral. As far as researchers have been able to discover so far it appears it may be a combination of those factors that cause the illness to manifest itself.

Current thinking is perhaps more than one gene may be involved, but scientists are not certain exactly which ones are linked to the disease, because different genes seem to play a role in varying patient populations. Simply having one of the suspect genes will not cause a person to develop the disease; it appears some sort of trigger must activate the immune system. Scientists think that the trigger may be a viral (something like Epstein-Barr perhaps) or a bacterial infection. Some medical researchers are investigating whether maybe the endocrine and nervous systems play a role in developing Sjogren’s as well.

This is how researchers think it may work: A person who has a Sjogren’s-associated gene gets a viral or bacterial infection. The virus or bacteria stimulates the immune system to act, but the suspect gene(s) alters the attack, sending the fighter cells (lymphocytes) to the moisture producing glands initially, usually eyes and mouth. Once there, the lymphocytes attack healthy cells, causing the inflammation which damages the glands and keeps them from working properly. But Sjogren’s autoimmune reaction doesn’t always stop at the eyes and mouth; it can affect all moisture producing glands in the body, as well as other parts of the body including connective tissues, and organs such as the lungs and liver.

Basically how I usually describe it to people is that my body’s immune system started fighting something (virus / bacteria) in my body which means it was doing the job it was supposed to do, BUT then something happened to make it start attacking the healthy tissue instead, causing the autoimmune disease to manifest.

Because medical scientists still have no sure knowledge of the cause, it is no surprise that there is not yet a cure. No specific targeted Sjogren’s treatments are currently available either; there is no “go to drug” specifically for Sjogren’s. The best help patients currently have available are drugs to alleviate symptoms, to attempt to arrest the inflammatory process, and the immune-response.

You might think Sjogren’s is rare, yet it is not. Estimates are 1 in 70 people in USA / Canada have Sjogren’s. What is rare is getting a diagnosis because its symptoms vary from person to person, are often initially subtle and possibly even intermittent. It is estimated that most people wait an average of 5-7 years to get a diagnosis, but many more wait ten or more years and see multiple doctors in the process as they search for an explanation for the myriad of diverse symptoms Sjogren’s can cause, including excessive dryness of eyes, mouth, skin, digestive tract, etc., life-changing fatigue, chronic muscle and joint pain, organ involvement, neuropathies, and even increased lymphomas.

For more information on Sjogren’s I recommend:

“The Sjogren’s Book” (4th edition) edited by Daniel J. Wallace for detailed medical information on all manifestations of Sjogren’s and the science of autoimmunity in relation to it. It reads like a medical textbook, so best for those with medical knowledge or patients who have significant background regarding Sjogren’s.

If you prefer a less scientific read, I suggest “the New Sjogren’s Syndrome Handbook” (revised and expanded 3rd edition) by David J. Wallace which is exceptionally patient friendly.

For first-hand patient stories of getting diagnosed and living with Sjogren’s, Christine Molloy’s “Tales from the Dry Side: The Personal Stories Behind the Autoimmune Illness Sjogren’s Syndrome” is the best I have read.

All of the above are available via Amazon if you are unable to locate elsewhere, including your public library via inter-library loan.

http://www.sjogrens.org
http://www.sjogrenscanada.org

Tales From The Dry Side photo

Sjogren’s Awareness: Oh how I wish I was oblivious!

April is Sjogren’s Syndrome awareness month. As a fellow sufferer said yesterday – it is no April Fool’s joke. In an effort to help educate others about Sjogren’s I will blog some of my journey with this illness throughout the month.

Today on my personal Facebook page, I was asked by a friend how long ago I was diagnosed, and if Sjogren’s was “progressive”.

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I was “officially” diagnosed with Sjogren’s in 2002 (based on positive blood work for 3 different antibodies as well as obvious physical symptoms), however I know that I had it long before then. Significant symptoms began about 12 yrs prior, and lesser symptoms even earlier (as a child/ teen).

After the Sjogren’s diagnosis the docs thought I had Lupus as well, as I met several of the diagnostic criteria for Lupus especially due to sun-related symptoms, including at times the tell-tale malar (butterfly shape rash) on face. Then later, they decided I didn’t have it because I had not developed any signs of “organ involvement” (lungs, kidney, brain most typical organ manifestations with Lupus).

Next they thought I also had Dermatomyositis (another AI disease with specific types of skin and muscle manifestations) due to a very particular type of rash I developed on my hands, Gottron’s Sign, specific to that autoimmune disease. This was diagnosed by a Dermatologist who specializes in skin manifestations of AI diseases.

Eventually they decided I had Undifferentiated Connective Tissue Disease which basically means I have symptoms of both Lupus and Dermatomyositis but not, as they say, “full-blown” disease. Also related to the above I have Raynaud’s Syndrome, and previous episodes of Vasculitis.

Then the most significant event in my medical journey thus far was in May 2009. I was diagnosed with Autoimmune Hepatitis; my immune system attacked and damaged my liver. Hepatitis just means liver inflammation, my illness is not contagious, nor contractible like other “hepatitis”. Quite simply, my body began attacking my liver for no good reason at all.

Immediately after liver biopsy the gold standard to confirm the diagnosis, I began aggressive treatment including initial high dose, then long term steroids – Prednisone, followed by a chemotherapy immune-suppressant drug which I have to be on for the rest of my life, which hopefully as long as I take it and it continues to work, will keep me in a sort of remission.

Additional liver biopsies have confirmed my liver health is not as compromised as it was in 2009. BUT the immune-suppressant drug I take to keep my liver happy has significant side effects including small daily ones like digestive system upset (vomiting / diarrhea/ nausea) ranging to increased risk of cancer especially of lymphomas, and skin cancers. Apparently approximately less than 5% of Sjogren’s patients get AI Hepatitis. I often wonder why I could not be in the small percentage of people who win the lottery instead.

There are some people who only get what are described as the hallmark symptoms of Sjogren’s – dry eye and dry mouth. Too many of us get multiple, systemic symptoms. In speaking to many other Sjogren’s patients it also seems that once you are diagnosed with one AI connective tissue disease you begin to collect others, a domino effect. Over the previous few years I have suspected that I have thyroid and neurological issues developing or undiagnosed which remain under investigation.

Is Sjogren’s progressive? No, not in the sense of diseases such as ALS, which continually ravage the body destroying function to a greater and greater extent leading to inevitable death from that disease specifically. Sjogren’s is however, potentially life-threatening when patients experience organ involvement such as AI Hepatitis or other serious complications. Sjogren’s patients are at 44x greater risk for certain lymphomas. The drug I need to be on for my liver also has increased risk of lymphoma as a side effect. Does this mean I will get lymphoma? No, but I do feel like am rolling the dice. Based on my lotto winnings, I am not often a lucky gambler. Fingers crossed, hoping for better luck this time!

For more info on Sjogren’s: http://www.sjogrens.org