Sjogren’s Syndrome 101
Happy Sjogren’s Awareness Month!
(Even though it’s the very last day).
I wanted to create this resource for anyone with Sjogren’s, anyone who loves someone with Sjogren’s, or anyone who just wants to learn more about this disease that affects over 4 million Americans. It is a complex disease that is under-appreciated and often under-treated by medical professionals.
I attended the Sjogren’s Syndrome Foundation National Patient Conference at the beginning of the month and it was such a validating experience to be around hundreds of other people dealing with the same daily issues as me, as well as hear from doctors and experts that my symptoms are valid and real. The conference really inspired me to be a louder advocate for this misunderstood disease!
(If you’re interested in Sjogren’s, I HIGHLY recommend checking out the Sjogren’s Foundation. They have some incredible resources on there site, as well as a monthly newsletter, index of support groups, and even online support groups – including ones specifically for pediatric patients or patients in their 20s and 30s!).
Some of the links in this post are affiliate links. If you purchase anything through them, I will receive a small commission, at no extra cost to you, that will help me continue to bring you blog content!
What is Sjogren’s?
Sjogren’s is a systemic autoimmune disease that can can affect the whole body.
Autoimmune disease are those in which the body attacks its own healthy cells, mistaking them for invaders. Some describe it as being allergic to your own body! Sjogren’s tends to specifically target moisture producing glands, such as the salivary glands and tear glands, which can lead to excissve dryness.
However, if there’s one thing I’ve learned (and that was validated by the conference) it’s that Sjogren’s is MUCH MORE than just a dryness disease!
A few fast facts about Sjogren’s:
- 4 million+ Americans are living with Sjogren’s Syndrome
- 9/10 or 90% of Sjogren’s patients are women
- It typically occurs after age 40 (but can be diagnosed at any age)
- It can be primary (standalone) or secondary (occurring with another autoimmune disease, such as lupus, rheumatoid arthritis, or scleroderma)
- People with Sjogren’s are 5x more likely to develop non-Hodgkin lymphoma that the average population
- There is no cure
Sjogren’s Symptoms
Sjogren’s comes along with a variety of symptoms such as:
- Dry eyes
- Can lead to corneal ulcerations or infection
- Dry mouth (xerostomia)
- Can lead to swollon parotid/salivary glands
- Can lead to dental decay, cavities etc.
- Can lead to difficulty speaking, chewing & swallowing
- Other dryness (such as nose, throat, lips, skin and vagina)
- Fatigue
- Joint Pain
- Brain fog & other neurological issues
- Gastrointestinal issues/irritable bowel
- Extraglandular involvement (of kidneys, liver, lungs, etc.)
- Higher risk of developing lymphoma
My Journey with Sjogren’s
My journey with Sjogren’s began in 2015. It is one of a few invisible illnesses that I have (I also had a total thyroidectomy and have IBS).
The summer before my junior year of college in 2015, I was working full time at a daycare. I would work an 8-4 shift, and then be asleep on the couch when my mom got home from work a couple of hours later. I was far more tired than I should have been, despite getting 8+ hours of sleep a night.
I was also getting sick a lot. That summer alone I had three separate gastrointestinal viruses! My doctors kept blowing off my symptoms saying my fatigue and constant sickness was a result of living in college dorm or my job working with kids. But I knew it was much more than that.
The first time I ever heard the word Sjogren’s was in August of that year. I woke up one morning with a swollen cheek, making me look a bit like a chipmunk. It hurt so much to chew and I could barely even drink a smoothie! I thought perhaps I had thrown my jaw out of place, as I’d had trouble with TMJ in the past, but wasn’t sure so I went to urgent care.
At urgent care, the did a CT scan and diagnosed me with parotitis – a swollen parotid gland. The nurse told me she had never seen it before (never a good sign) and they didn’t know what had caused it. So I went home and did some googling…
I found out that the 3 main causes of parotitis are: mumps/measles, bad oral hygiene, and Sjogren’s. I definitely didn’t have the first two, and assumed I didn’t have the third either, as I’d never heard of it before. I completely shrugged it off.
At the end of the summer I returned to college for my junior year even though I was feeling off. I hung in there for a bit, but it was clear something was wrong. I was profoundly tired, run down, constantly sick, and it was making me super anxious. I finally convinced my primary care physician to run some tests. You can learn more about these tests and my results in the video below:
After a battery of tests done by 3 different types of doctors, I was eventually diagnosed with Sjogren’s. My entire life changed – I move home from school and took a few months off from life before eventually returned to college via online classes and beginning a part time job. I’ve had to make many, many lifestyle changes since then (discussed below) and I’ve learned SO much about myself, life, and living with a chronic illness along the way, which I’ve shared about here on this blog, as well as on my Instagram!
Testing for Sjogren’s
If you are questioning whether you may have Sjogren’s, the blood tests you will want to have done are:
- ANA (Antinuclear antibody) – present in 70% of Sjogren’s patients
- Rheumatoid factor – present in 40-70% of Sjogren’s patients
- Ro (Anti-SSA) & La (Anti-SSB) antibodies – present in 60-80% of Sjogren’s patients
- Increased serum immunoglobulin (IgG) levels – present in 50-60% of Sjogren’s patients
- Elevated ESR (sedimentation rate) – indicates inflammation in the body & can indicate inflammatory disorder, such as Sjogren’s
Other tests include:
- Lip biopsy – biopsy of salivary glands
- Salivary flow – measure salivary flow
- Schirmer test – eye test that measures tear production
- Rose Bengal or Lissamine Green – eye tests that look for dry spots
Sjogren’s Treatment Tips
Here are my top tips for dealing with some of the most common symptoms of Sjogren’s:
Dry Eyes
- Artificial tears
- Make sure to use preservative free eye drops – I like Thera Tears (they contain a preservative that disappears when it comes into contact with the eyes). They make a variety of eye drops for day and night.
- You can also get prescription eye drops such as Restasis or Xiidra (I use the latter).
- Omega-3 fatty acids
- Fish oil supplements
- Thera Tears makes an eye nutrition supplement with fish oil, flaxseed oil, and vitamin e
- Sundown Naturals makes an Omega 3, 6, 9 with fish, flax, and borage seed oils
- Chia seeds – a natural source of omega 3s
- Fish oil supplements
- Warm compresses to stimulate natural tear production – I use this microwaveable eye compress, but you can also use a warm cloth in the shower
- Preserve natural tears
- Use shields like glasses or goggles to keep out wind and debris
- Punctal plugs – tiny medical devices inserted into tear ducts to block tear drainage
Dry Mouth
- Stimulate saliva
- Express salivary/parotid glands
- Drink water consistently in small sips throughout the day
- Drops of lemon in water – the acidity can help stimulate salivary flow
- Sugar free candies and gums – like lemon drops, ACT lozenges or gum, or Biotene lozenges
- Pharmacological salivary stimulants – mediations like pilocarpine and cevimeline
- Replace saliva
- Minimize aggravating factors
- Avoid smoking
- Avoid alcohol
- Avoid tartar control toothpaste
- Avoid mouth breathing
- Use a humidifier (I use this one)
I have some more tips for dryness in this post, especially for dry skin, that anyone can benefit from!
Fatigue
- Exercise – even if its the last thing you feel like doing! It doesn’t have to be a “workout” or anything overly strenuous. A walk outside is a great option!
- Schedule in time to rest – take breaks throughout the day where you can sit (or lay down) and rest.
- Take naps – take daytime naps on days when you really can’t make it through. Try not to take naps in the late afternoon or evening, as they could interrupt your nighttime sleeping.
- Prioritize your time – choose the most important things to do first (or at the point in the day when you usually have the most energy). Know that you won’t get through your to-do list everyday and that’s ok! Learn to prioritize tasks, and also prioritize your health and energy over everything.
- Learn to say no – this is part of prioritizing your time. You can’t do everything and you have to learn to say no to things that will drain your energy too much. You may even have to skip out on things you’d like to be doing in order to conserve energy. Energy is a currency for you!
- You should also have vitamin levels checked, as an insufficiency of vitamins like D or B12 can also lead to fatigue, but are easily treated with supplementation.
Joint Pain
- Exercise – can also help with joint pain. Keeps it low impact – yoga is a great option!
- CBD – CBD can help reduce inflammation and pain. You can take it as an oil or in a capsule, or use a topical on the afflicted area. (Use code “blissful” for 10% off Alive Market CBD products).
- Turmeric – an anti-inflammatory spice that can be added to food or drinks or taken in pill form
- Epsom salt baths – can help relax muscles and loosen stiff joints
- Oral or topical pain relievers
- Application of heat or ice
- Acupuncture – a form of Chinese medicine that can help reduce chronic pain
Medications
The most common medications prescribed for Sjogren’s are:
- Plaquenil (hydroxychloroquine) – calms the immune system without suppressing it (so you can still fight off infections)
- Make sure to see an eye doctor regularly for testing, as Plaquenil has a very slight chance of affecting the retinas
- Rituxan (rituximab) – a chemotherapy drug
- Methotrexate – immunosuppressant and chemotherapy drug
An anti-inflammatory diet can also help lower autoimmune symptoms. Many people with autoimmune diseases consider and AIP (autoimmune paleo) diet or eliminate certain food groups that they find trigger symptoms.
Finally, here is a vlog I did about what it is like to live a week with Sjogren’s:
