Testing

You feel and think that you have all of the symptoms of Sjogren’s syndrome. But how do you know for sure so you can start helping to treat it? The first step is visiting your doctor.

The doctor will conduct a complete physical check-up as well as inquire about your family history. There are common tests for detecting Sjogren’s syndrome in different places of the body.

The doctor may dye your eyes by dropping a liquid onto the bottom eye lid and allowing your natural blinking to spread the liquid around. The areas of the eye that are injured will be detected by the colored liquid. Rose bengal or lissamine green are the usual colors used. Slit lamp procedure may take place as well.

Then there’s the Schirmer test, which measures tears to see how the lacrimal gland is working.This procedure can be performed in two ways: one way, the doctor places thin paper strips under the eye lids and allows the papers to collect tears for 5 minutes. The moisture and amount of tears is then deduced (the average Sjogren’s patient produces less than 8mm of tears). The second way uses a cotton swab to induce and stimulate tear production/reflect through the nasal passage.

A sample of saliva may be taken by your doctor. Then a simple examination will be conducted in which the doctor looks for swollen salivary glands, dryness, stickiness, cracked lips, mouth sores, thickness of saliva, or cavities.

Your doctor may want to further examine the efficiency of your salivary glands by taking a biopsy of your lower lip. By looking at the sample under the microscope, lymphocytic patterns can detect if Sjogren’s syndrome is present.

Generally, you are considered to have Sjogren's if you have dry eyes, dry mouth, and a positive lip biopsy. But the doctor may decide to do additional tests to see whether other parts of the body are affected.

Routine blood tests can detect sugar level and kidney reproduction. Immunological tests check for antibodies commonly found in a Sjogren’s syndrome patient’s blood. (For example, Antithyroid antibodies, Immunoglobulins and gamma globulins, Rheumatoid factors (RFs), antinuclear antibodies (ANAs), or Sjogren’s Antibodies (SS-A, or SS-Ro or SS-La). X-Rays can show inflammation in the lungs, which is common in Sjogen’s syndrome patients as well. Urinalysis tests how well your kidneys function.

If any of these tests, but not all, are conducted and come back positive, get a second opinion. Sjogren’s syndrome is known as a “hiding” illness because it is hard to detect and can be masked by something else or impersonating something else. Sometimes, Sjogren’s syndrome is very commonly misdiagnosed. If you do in fact have the disease, do not panic. Although it is not curable, it is treatable and not fatal. There are plenty of support groups you can join and places where you can share your experiences and help others diagnose their illness.

Empower Yourself

If ever a person is to go through a traumatic experience, the most important and healthy remedy is a support system. It is scientifically proven that the power and force in numbers creates unity amongst masses and that they can move past obstacles of even the most difficult times if they stick together. Health support groups are perhaps the most popular, and yes, the most helpful. The resources that are provided and available are endless, and no one will feel alone. It is possible to defeat the impossible.

Through research of my own, I came across a Sjogren’s Syndrome support system that is expressed through a conference or seminar.

Every April in San Francisco, California, the Sjogren’s Syndrome Foundation holds a SSF National Patient Conference called “Empower Yourself” in which both Sjogren’s Syndrome patients and their families are welcome. Last year, the conference was a success. This past April, it was equally successful, but more populated than last year. As the years go by, word about the conference spreads. As a Sjogren’s Syndrome informant, it is my job to keep you updated on awesome events such as this one.

The aim of the conference is to educate Sjogren’s victims and their families about the illness and how it affects your body. The amount of new information about the disease is overwhelming, and many may be confused or intimidated by the various affects. “Experienced” patients, healthcare professionals, and other experts all speak at the conference so that the audience gets a taste of the illness from every angle, and all are speakers are available for private questions and concerns. What better way to take control of your health than to learn from the best minds?

The two-day-event includes dozens of doctors from every field in which Sjogren’s Syndrome affects, from eye-care provders to rheumatologists, and from dentists to autoimmune specialists and researchers. The presentation explores an illness overview, the neuropathy of Sjogren’s, CNS Disease, “A Patient’s Perspective in Survival”, lung complications, the doctor/patient relationship, dry mouth and eye issues, nutrition and diet, and heart disease/autoimmune disease relations (and probably a discussion about the difference between Primary and Secondary Sjogren’s).

I have not been to this conference yet, but it seems like a great event to be part of! The price per SSF member and their families is $165, and the price for non-members is $190 (the high expense goes to thanking the specialists for their time and towards research and the foundation!) For more information about next year’s events, (and other events to go to), contact 800-475-6473.

Sjogren’s Diet

Sjogren’s Syndrome patients can slow down the progression of their Sjogren’s if they pick up the habit of a good diet. Most of the time, dietary suggestions (which prove to be most helpful to mitigate flare-ups) are to avoid spicy foods, foods hard in consistency, avoiding alcohol, wine, and beer, and avoiding acidic fruits, juices, and vegetables. These cases either further dry out the mouth or irritate dry mouth. In few cases, it is also recommended that gluten-free foods be eaten (although that is usually just for patients who have celiac disease). It is important to notice which foods make you feel better and which make your disease worsen, because even though these dietary habits are usually helpful, every person is different, especially since Sjogren’s Syndrome can be linked to many other different diseases that call for their own precautions.

Many Sjogren’s patients find it easier to always make sure a liquid food or substance is being consumed with every meal. For instance, use gravy, mayonnaise, soups, sauces, dairy products, or dressings, or even just try dipping foods into your drink (for example, cookies in coffee). Food processors are an important kitchen item to own so that you can bring your food to the point of liquefying. Add skim milk, broth, water, or margarine to foods, as well, to create liquid and help the food swallow and digest better. Using straws is also a good way to remind yourself to keep sipping as you eat and help the food move down into your digestive track quicker.

Avoiding caffeine is very important. Coffees and teas should only be consumed if they are decaffeinated. Also, increasing the overall percentage of vegetable and fruit intake and decreasing the overall percentage of grains can make you feel ten times better.

Smooth, soft, and creamy foods are the best. Foods cooked until they are tender are easiest for digestion, even if the food is meat! In addition, high calorie and cold liquids such as milk shakes, instant breakfast drinks, or liquid nutritional supplements are helpful for both calories and easy eating. Hot, salty, acidic, crunchy, dry, and spicy foods should be avoided at all costs. They aggravate a dry digestive track and can scrape or scar the lining.

Studies have shown that Sjogren’s patients who change their eating habits have decreased pain and symptom flare-ups. By adopting these few eating practice, you can be pain-free!

Plaquenil; a source of comfort or risk?

One of the most common medications prescribed to treat Sjogren’s Syndrome is Plaquenil. It is considered an older disease-modifying and anti-rheumatic drug or DMARD. It being a DMARD, it is a slow-acting drug and may take up to six months before full benefits of Plaquenil are realized. Plaquenil is actually a type of anti-malarials (meaning it prevents/treats malaria and is common in Africa), but it is also used for autoimmune conditions unrelated to that disease. Plaquenil’s main purpose is to decrease pain, swelling, and the chance of joint damage. Doctors are still not 100% sure of how it works, and for that reason, it is not recommended to become pregnant or start Plaquenil while pregnant. Birth control should be administered throughout the time taking Plaquenil.

The average starting dosage is Plaquenil is 200mg twice a day or 400 mg once a day. Patients should be regulated either more or less doses a day based on reaction to it in the beginning stages. If the dosage given is too much, toxicity is a high risk that develops quickly. There are safety warnings when using Plaquenil that should be noticed in an effort to minimize side effects. Although it can be a highly helpful disease, different reactions may cause you to think: is taking this medication work the risk? Or is taking the medication in your best interest?

Plaquenil is prescribed to patients who cannot tolerate new biologic DMARDs. Even though the new meds received FDA-approval in 1998 and subsequent years, Plaquenil had not become less prescribed because of patients who are afraid to try newer products or patients who are just content with the quality of life that is provided by the Plaquenil.
The common side effects of Plaquenil include nausea and diarrhea. Taking the medication with solid foods can solve that problem for most patients. Less common side effects which may or may not be tied to Plaquenil include skin rashes, hair thinning, and weakness. A rare side effect of Plaquenil involves visual changes or loss of vision. Blindness may or may not be reversible when you stop taking the Plaquenil. If abnormalities occur, toxicity has developed and dosage should be stopped immediately.

Some patients are just more susceptible to vision problems. People at higher risk include people who have been prescribed Plaquenil for many years, are over the age of sixty, or have kidney problems. All patients should et opthamoligic examinations before being prescribed Plaquenil, and if the patient's initial opthalmologic examination is normal and the patient is considered low risk, the patient does not have to be retested for five years. It is recommended that high risk patients have annual eye examinations. Certain drugs taken along with Plaquenil may also heighten the risk of side effects. These common supplements include antacids, methotrexate, metoprolol, penicillamine, dignoxin, kaolin, botulinum toxins, or magnesium trisilicate.