So very much has happened since I last blogged. In my last brief post, I talked about how much the summer heat was sending me into a major flare. I’m just beginning to improve. My primary care physician began to suspicion in September of 2018 that there was an underlying condition beyond MCAS and EDS causing my health concerns. She ran an autoimmune panel which was suggestive of an autoimmune disease. My PCP made a referral to the University Rheumatology department. The first intake opening wasn’t until March of 2019, but luckily they had substitute doctors come in.
My first appointment with the University Rheumatology department was in November of 2018. After many vials of blood and other tests, the rheumatologist diagnosed me with Sjögrens Syndrome in December of 2018. Sjögrens Syndrome is a rheumatic autoimmune disorder. Someone with Sjögrens Syndrome either has primary Sjögrens (they have not other rheumatic autoimmune diseases) or secondary Sjögrens (the person has at least one other rheumatic autoimmune disease, most often lupus or rheumatoid arthritis). According to the Sjögrens Syndrome Foundation, it’s about a 50/50 split on the diagnosis. At this point, I’ve been diagnosed with Primary Sjögrens Syndrome.
Symptoms of Sjögrens Syndrome
Sjögrens Syndrome is one of the most prevalent autoimmune diseases. Although the general perception is that it only causes dry eyes and dry mouth, it is a systemic disease. That is it affects the entire body. People with Sjögrens Syndrome can suffer from mild to debilitating symptoms. Since the symptoms mimic other diseases, it’s often misdiagnosed as other diseases.
Symptoms may include, but aren’t limited to:
- a dry, gritty or burning sensation in the eyes ✔️
- dry mouth ✔️
- difficulty talking, chewing or swallowing
- a sore or cracked tongue ✔️
- dry or burning throat
- dry or peeling lips
- a change in taste or smell
- increased dental decay ✔️
- joint pain ✔️
- vaginal and skin dryness ✔️
- digestive problems ✔️
- dry nose, sinusitis ✔️
- debilitating fatigue ✔️
- bladder problems ✔️
- neurological problems ✔️
- peripheral neuropathy, Raynaud’s Syndrome ✔️
The symptoms with a checkmark are all ones I have experienced, plus others. You can find a lovely graphic that shows the breadth of symptoms here.
Treatments for Sjögrens Syndrome
Like other autoimmune diseases, there is no cure for Sjögrens Syndrome. Treatment focuses on decreasing symptoms and suppressing the immune system. For dry eyes, there are numerous rewetting drops available over the counter. Prescription options include Restasis, which is cyclosporine, as well as Xiidra. There are many dental products available over the counter for dry mouth. The most popular oral over the counter products are Biotene products. Two prescriptions which increase saliva production are available – Evoxac (cevimeline) and Salagen (pilocarpine hydrochloride). Neutrasal is a mouth rinse available by prescription as well. Treatments for systemic symptoms include disease-modifying antirheumatic drugs (DMARDs), biologics, and steroids. DMARDs include Plaquenil, methotrexate, cyclosporine, azathioprine, Sulfasalazine. Biologics include leflunomide, Remicade, Humira, Enbrel, and Rituxan. Other medications are often added for symptom relief as needed. Some people find relief with autoimmune diets.
My systemic treatment for Sjögrens Syndrome
I started on prednisone to cut down the inflammation in my body quickly while the Plaquenil reached therapeutic levels. The steroids helped the inflammation and widespread joint pain, as well as some of my gastrointestinal concerns, immediately. But steroids have their own issues. Mainly for me, weight gain, mental health effects, causing bone loss when used long-term, and possibly inducing diabetes are the biggest concerns. When stopping them, your body can go into an adrenal crisis because your body no longer makes its own cortisol while you’re on them. It’s important to taper down on steroids for this reason. After 3 months, I was over on Plaquenil only. My inflammation markers have increased again since stopping the prednisone, but we’re trying to manage without steroids, or stronger drugs for now.
My symptomatic treatment for Sjögrens Syndrome
I use Restasis every day along with rewetting drops. When you start Plaquenil, you must have a thorough eye exam by an ophthalmologist to get a baseline status because Plaquenil can damage the retina. Come to find out, I already have corneal scarring from my dry eyes, a slight pressure increase in one eye, and I have cataracts in both eyes – I’m only 44! I also take Flaxseed Oil supplements because it’s believed omega fatty acid supplements can help with dry eyes.
My mouth full of fillings is a testament to the damage Sjögrens and dry mouth can cause. I know that my addiction to Mountain Dew did not help – goodness gracious it’s a wonder I have any teeth left! I still drink about 20 ounces of soda a day, but it’s cola instead. Drinking as much Gatorade as I can handle drinking in a day helps with dry mouth and my symptoms of postural orthostatic tachycardia syndrome (POTS). My rheumatologist prescribed Evoxac to help stimulate saliva flow. Let me tell you, I haven’t drooled at night in a very long time, and I’m now drooling on my pillow almost nightly! I’ve never been so happy to drool.
My joints are flaring again occasionally since being off the prednisone, so my rheumatologist and I decided to try a topical NSAID gel since NSAIDs can cause issues when you have MCAS. I haven’t seemed to have a problem yet with the topical NSAID. The last time I took Advil, I was still getting hives daily and it seemed to make the hives worse, so my doctors and I had decided that I would avoid NSAIDs orally.
Connections to other diseases
It’s likely that the Sjögrens Syndrome is the cause of my hypothyroidism, as well as my POTS. After treating my Sjögrens, POTS, and MCAS, I am only having hormonal migraines – and that’s not even monthly. Because of the decrease in migraine frequency and the threat of near-angle glaucoma from Topamax – since I have increased pressure, my primary care doctor and I decided I would wean off the Topamax and see how I do. After seeing a cardiac electrophysiologist in January, I was given an official diagnosis of POTS and started on midodrine for it. If I take that and drink enough Gatorade, most days my POTS symptoms are manageable. It’ll be interesting to see what this summer is like with the treatment. Hopefully, I’ll continue to improve, but I’ve been warned flares can and probably will wax and wane.
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