I was diagnosed with Sjogren’s Syndrome only three years ago. I’ve certainly had it longer than three years, but it takes many years for the blood work to show the antibodies that point to Sjogren’s. Since 2012, my doctor’s told me that I had an autoimmune condition, but didn’t have blood work to show it yet. So, I suffered with no medical help until one doctor decided to help.
This doctor sent me straight to a specialist to get a lip biopsy. When the lip biopsy was positive for Sjogren’s, I was sent to an eye doctor and rheumatologist. My eye doctor believed that my eyes were positive for Sjogren’s, based on tests for tearing/dryness. The rheumatologist bloodwork also showed the proper Sjogren’s antibodies. Now, I could get all the great Sjogren’s treatments. Oh, I’m kidding. There aren’t any great treatments. I was offered Plaquenil. Only, Plaquenil.
Because of past medication problems, my dose of Plaquenil was introduced over six months. I kept waiting for it to help. Then, the doctor said that it sometimes takes up to a year to get the full effect. Now, I’ve been on this drug for almost three years. It hasn’t helped my symptoms of pain and extreme fatigue. My eyes have steadily gotten dryer and I was finally offered a prescription for dry eyes. It really helps, but drains down my throat and makes me feel like throwing up.
What are Sjogren’s patients to do? I will admit that Plaquenil has helped many patients, but has done nothing for me. I’m trying autoimmune diets, but haven’t been able to stay on them. I continue to ask doctors for help and get very little actual benefits.
The Sjogren’s Syndrome Foundation helps to promote this condition and it needs help. Sjogren’s is very common but also relatively unknown to the general public. When I tell people that I have Sjogren’s they just look confused about the weird name, and say that they’ve never heard of it. I often tell people that it’s similar to Lupus (and they all know about Lupus). Many of my doctors assume that my only problems with Sjogren’s is having dry eyes and mouth.
Sjogren’s is so much more than that. Every Sjogren’s patient is different and has a different group of symptoms. Symptoms can get worse or better and life often feels like a roller coaster. Sjogren’s Syndrome common symptoms include:
- Neurological problems, concentration/memory-loss, dysautonomia, headaches
- Dry eyes, corneal ulcerations and infections
- Dry nose, recurrent sinusitis, nosebleeds
- Dry mouth, mouth sores, dental decay, difficulty with chewing, speech, taste and dentures
- A change in taste or smell
- Dry or peeling lips
- Dry or burning throat
- Swollen, painful parotid/salivary glands
- Difficulty swallowing, heartburn, reflux, esophagitis
- Recurrent bronchitis, interstitial lung disease, pneumonia
- Respiratory issues like shortness of breath, cough
- Stomach upset, gastroparesis, autoimmune pancreatitis
- Abnormal liver function tests, chronic active autoimmune hepatitis, primary biliary cholangitis
- Interstitial cystitis
- Irritable bowel, autoimmune gastrointestinal dysmotility
- Arthritis, joint/muscle pain
- Peripheral neuropathy, Raynaud’s
- Vaginal Dryness, vulvodynia
- Fatigue, vasculitis, lymphoma
- Inability to focus or ‘brain fog’
- Skin sensitivity to UV light
(list from Sjogren’s Foundation)
What can we do to spread awareness and push for more research into this horrible condition? The Sjogren’s Foundation has these ideas which can help:
- Become an Awareness Ambassador – you can sign up on their website HERE.
- Participate in World Sjogren’s Day, where you can help by donating money. They even have a way to help you set up a Fundraising Page.
- During April’s Awareness Month, join the Sjogren’s Foundation.
- Find an Event during April to participate in. There are Virtual Walks for Sjogren’s and a Virtual Conference, too. Meet other’s with Sjogren’s and raise money for research. The conference could provide you with tons of information, including the latest treatments and research news.
- For those who can run or for family members who can run, there is a Team Sjogren’s Running Program.
- To find promotional items, conference recordings, and apparel that help to educate and spread awareness, visit the Sjogren’s Foundation Shop.
If you have Sjogren’s, suspect you might have it, or love someone with it, I hope that you’ll help to spread awareness in April and every month!
@2021, copyright Lisa Ehrman
Disclaimer: I’m not a medical expert. This post contains my opinions and experiences and is not meant to be taken as medical advice. If you have a medical concern, please consult your personal physician.