Newly Diagnosed

Learning about Sjogren's and how to manage the disease:

 

I have tried to put together information that has helped me since my diagnosis; including what I wish I new when I was first diagnosed.

 

If you are newly diagnosed with Sjogren's and you are looking to learn more about the disease, please read on. 

This information is also helpful if you are the spouse of someone newly diagnosed. 

First, being newly diagnosed with an autoimmune disease can be devastating. Just know that while there is indeed changes that will come with your diagnosis the silver lining is that now that you have a diagnosis, you can start doing something about it! 

Grieving the loss of your former (healthier) self and life is completely normal, I found that educating myself on my disease(s) has been detrimental to my healing. As is often said, "Knowledge is Power!", and I truly believe this is the case when it comes to managing your own illness(es).

Sjogren's FAQ:

What is Sjogren's Syndrome? 

"Sjogren’s (“SHOW-grins”) is a systemic autoimmune disease that affects the entire body. Along with symptoms of extensive dryness, other serious complications include profound fatigue, chronic pain, major organ involvement, neuropathies, and lymphomas." - Sjogren's Foundation

How will it impact my life?

Sjogren's, like many other autoimmune diseases, can be felt on a continuum. Symptoms can be felt as a minor nuisance all the way up to debilitating life altering or life threatening. Once you have a diagnosis it's important to monitor your own symptoms and report them back to your rhuemetologist so s/he can help manage and treat your disease. 

Is there a cure for Sjogren's Syndrome? 

No, currently there is no cure for Sjogren's Syndrome. There is only treatment. 

What type of doctors treat Sjogren's Syndrome? 

The primary specialist that treats Sjogren's is a Rhuemetologist. A rhuemetologist specializes in treatment of the bodies muscles, joints and bones.

 

Your Primary Care Physician (PCP) will work with you and your Rhuemetologist to manage your medication.

 

Sjogren's patients also need to be monitored by a dentist for oral health and an Opthalmologist for vision health.

 

If disease progression persists, an individual may need to see other specialists, for example a neurologist of a patient is exhibiting signs of neuropathy. 

How is Sjogren's treated? 

It is important to keep on top of your oral health and vision when you have Sjogren's. Your dentist and opthalmologist can help provide recommendations on products or services that can help you specifically. There are many over the counter products to help with the debilitating symptoms of dry eyes and dry mouth. 

If disease progression exists and you are exhibiting symptoms of joint and muscle pain or debilitating fatigue, your rhuemetologist will typically start you on prescription medications. Some medications typically used to treat Sjogren's include Hydroxychloroquine (Plaquenil), Azathioprine (Imuran), Naproxen, and Mexotrethate, 

How can I help support my health care team with my treatment?

Prepare for your doctors appointments by being on time and having a list of symptoms and medication available. 

Where can I learn more about Sjogren's?

In Canada visit the Sjogren's Society of Canada web page. 

In the USA, visit the Sjogren's Foundation web page.