What are the Benefits of Early Diagnosis in Sjogren’s Disease?

What is Sjogren’s Disease?

Sjogren’s Disease is systemic and over 4 million Americans have this disease. When diagnosed, the disease may stay the same or progress. This autoimmune disease is mistakenly known to be a disease of dry eyes and mouth. These are two symptoms, but there are many more. Many doctors don’t take this seriously and haven’t learned much about the way it affects every patient differently.

There can be mild cases or severe. The symptoms may come and go. When they are at their worst, we call it a flare. More symptoms include: profound fatigue, chronic pain, major organ involvement, neuropathies, and lymphoma.

If you develop Sjogren’s, other autoimmune diseases may also be present, such as: Lupus, Rheumatoid Arthritis, or Scleroderma. Many patients have dry skin or rashes, brain fog, headaches, or difficulty swallowing (because the throat is too dry).

Treatments for Sjogren’s Disease

Science has told us that early diagnosis is helpful. Treatments may prevent serious complications, but there are very few treatments. Hydroxychloroquine, generic for Plaquenil, has been the main drug offered. This is a drug developed for Lupus.

Other treatments are based on a particular symptom. There are drugs and sprays to moisten the mouth and eyes. Nothing helps with fatigue, unless you are lucky enough to get benefits from Hydroxychloroquine or Methotrexate. If your disease causes your organs to be attacked, steroids are usually given.

For joint or muscle pain, we are offered Ibuprofen. Biologics can be used when the patient has high levels of activity. Patients like me are not supposed to take Ibuprofen, because it has damaged my kidneys. Hydroxychloroquine can damage eyes, so an ophthalmologist checks them once or twice yearly.

Patients with Sjogren’s see many specialists: rheumatology, dermatology, pulmonology, dentists, ophthalmology, neuorology, cardiology, nephrology, and oncology. I see six of those on a regular basis. I have severe fatigue, psoriasis, dry itchy skin, teeth that are literally crumbling, severely dry eyes and double vision, small fiber neuropathy, dysautonomia, raynauds and painful joints and muscles.

There are new drugs in final trials, and I hope that they are effective against Sjogren’s symptoms. As of now I take 17 different medications. Not one of them is truly giving me any quality of life. They may be working against each other, I just don’t know. When a patient has so many specialists, there is no one trying to coordinate and treat the whole person. I had a doctor in Kansas who claimed to, but he really didn’t help me.

My Experience with Sjogren’s Disease Diagnosis

9 out of 10 Sjogren’s patients are women, and getting early testing for Sjogren’s isn’t easy. Doctor’s won’t perform ANA tests unless there are a number of symptoms, so most are diagnosed at an advanced stage. When I was in my late 30’s and all through my 40’s I told my doctor how I was exhausted and in pain. He told me for over 10 years that I just needed anti-depressants. He said that would fix me up.

It was when I moved to a new state that a doctor suspected an autoimmune disease. He tested me for everything. He found that I had a positive ANA and referred me to rheumatology. This doctor tested me for autoimmune diseases and she said that I was positive, but there weren’t any specific markers. She gave me the fibromyalgia diagnosis, which was a problem.

Because I moved again, the new rheumatologist found positive ANA, but still nothing specific. She stuck with the fibromyalgia diagnosis and continued me taking Cymbalta. This bad drug helps a little, but I would love to stop taking it. From my research, it’s one of the hardest drugs to stop with too many side-effects.

After a wonderful NP was worried about my health, she sent me to a neurologist who specializes in dysautonomia, POTs, neuropathy, and muscle testing. He found that I have small fiber neuropathy and dysautonomia. The doctor suspected Sjogren’s and sent me for a lip biopsy. He did more for me than any other doctor has.

The lip biopsy was positive for Sjogren’s. I finally was diagnosed, and it took 8 years. It was actually much longer, but I was gaslighted before I even knew what that meant. I don’t know if all the other co-morbidities could have been prevented with early diagnosis, but I wish I would have had a chance to be healthier.

Early vs Late Diagnosis of Sjogren’s Disease

For doctors who care to investigate there are tests that could point to an early diagnosis. Asking patients about certain symptoms and then testing them could make such a difference. https://pubmed.ncbi.nlm.nih.gov/28283891/ and https://pubmed.ncbi.nlm.nih.gov/38336735/

Suspecting organ involvement could lead a doctor to do tests that could show a number of autoimmune diseases. It seems like when the doctors have a list of questions, they should ask about autoimmune symptoms. I know that many symptoms could be something else, but there should be some sort of questionnaire to screen for these terrible diseases.

Early diagnosis could also help the patient to take it into consideration when planning the career. I wish that I had known that I was born with hEDS. This would have stopped me from getting a degree in Piano Performance. Severe pain from hEDS, arthritis, and Sjogren’s stopped my ability to play instruments for just a few minutes. A few years after that, the pain made it impossible. Simple screening could have prevented all of that.

Learning of the disease early would allow me the opportunity to practice moving correctly and avoiding things that could lower the quality of life. There might also be treatments, physical and emotional therapy, special diets, or any number of things that could be started young.

My hope is that scientific research will continue and provide patients something that will be specific for Sjogren’s disease. I don’t expect a cure, but I would love to have a higher quality of life.

@2026, 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.