How often should a SjS patient visit their rheumatologist?
What can a patient expect at the examination?
What specific bloodwork and tests should be done?
How often should a SjS patient have their glands and lymph nodes examined?
Future follow-up visits need to be tailored to your medical profile which is usually established in the first or second visit. At these meetings, the doctor will check the more obvious disease locations such as eyes, mouth, and skin and then investigate the possibility of more pervasive systemic involvement. If symptoms are mild and only oral/eye dryness are involved, they may not need to see the Rheumatologist after the initial Consultation/Evaluation. At either the first or second of these meetings, the doctor will discuss disease management with you. Plan to see your doctor with your list of questions and take a pencil and paper to write down what is said.
For those of you who have more complicated symptoms, perhaps Gastrointestinal or neurological in nature, you should see your Rheumatologist every one to two years and have a immunoelectrophoresis (immunfixation) blood test to screen for the early development of Lymphoma.
There is no data that an examination or determining the size of the salivary glands will help with managing the disorder. Also, after that first diagnosis, there are no routine blood tests recommended.
That said, some patients may benefit from follow-up blood work if it would help patient and doctor to make decisions about future management.
The most important part of the follow-up visit is review of your biological system symptoms and any new medical history. This is the most important “clue” to the disease’s activity.