A Little Bit of Maintenance for a New Year

As the New Year has arrived, most people are making a point to get to the gym and lose that extra turkey leg from the holidays. Those of us with chronic disease need to be sure we keep making our follow-up appointments and check ups.

This week was my follow up with my rheumatologist. Depending on what medication(s) you are on, your disease activity level, and how you are feeling, your appointments could be as many as weekly, monthly, to bi-annual or annual. No matter what your schedule it’s important to continue to make those appointments.

What are they looking for?

At your maintenance appointments, you will have your weight, blood pressure and vitals taken. The nurses and doctors will ask you about your medications, as well as changes in your symptoms.

Your visit will vary depending on what has been going on with your disease or medications. At my last appointment it was important for me to discuss the recent serious sinus infection I had, where I was medicated with corticosteroids. In my particular case, the corticosteroids not only helped me get rid of my infection, but they also alleviated some pleurisy pain I was having.

Throughout my disease history, pleurisy pain has plagued me. I have been struggling with keeping it away, as my disease has been more active after giving birth to my son. Since I took that short round of corticosteroids, I haven’t had one breath pain. However, my oral and nasal sores returned in number, when I stopped the corticosteroids. I mentioned the mini-flare to the doctor, and as it turns out the corticosteroid round I took was incorrectly prescribed for someone with active disease. It’s important to discuss a treatment given by another doctor with your rheumatologist. There was nothing wrong with the prescription in a “normal” sinus infection situation; however, an abrupt stop to a corticosteroid in active disease can actually cause a flare. I learned how to step down the corticosteroid, myself, if it is not prescribed in a way to do so. My advice, ask your rheumatologist for directions is you have something prescribed by another physician.

Do they need to poke you at each appointment?

It is very important, if you are medicated, or have active disease, or have inactive disease but haven’t been seen in awhile, to have blood work and urine cultures done. The only way for doctors to “see” into your body is to look at your blood and urine.

What are they looking at?

If you are taking medication it is important not only to monitor disease level to be sure it is decreasing on the medications, but to monitor the possible side effects of taking the medication.

Tests 1

CBC – complete blood count. They want to look at the number of types of blood cells in your sample. Low, or high, white or red blood cells can indicate health problems.

Blood Chemistry Screens – these are important to look at organ function. You may, or may not, have organ-effected lupus, but either way your organs can be effected by medications or disease. Kidney function – one of the first signs or trouble on a medication, or in lupus disease, is kidney malfunction. You want your doctors to see the first signs of kidney struggles, to get that stopped immediately. Liver function – active disease, as well as certain medications, can cause the liver to struggle. Again – you need this symptom stopped immediately. The longer problems remain in these organs, the more life-threatening your disease becomes.

Sedimentation Rate (ESR) – this reveals inflammation in the body.2 This rate helps your doctor determine your disease activity level. Inflammation causes your red blood cells to clump together, and this will force these cells to settle to the bottom of their test tube of blood more quickly. The distance the red blood cells fall inside the tube over one hour is how ESR is measured. The farther they have dropped during the hour, the greater the inflammatory rate. This test is just another piece of the puzzle to provide clues to your rheumatologist what is happening with your disease. A Normal Range: For Men – 0-22 mm/hr; Women – 0-29 mm/hr

ANA – antinuclear antibodies –  This is one of the criteria for a lupus diagnosis. These levels show the presence of antibodies against your own body tissues. This alone is not enough to say you have lupus. There are other health issues that can cause this level to be high and give a positive result. A person can also be ANA negative, but still have an autoimmune disease, such as lupus.; although, that is less common.

Anti-DS DNA antibodies – this is a level of antibodies that fight against your own DNA material. This is seen most in active disease, or kidney disease in lupus patients. 1

Anti-SM antibodies – this is an antibody to a protein in a cell’s nucleus, and is very specific to lupus.

Anti-SSA/Ro and Anti-SSB/La – these are also seen in autoimmune patients. These are important to monitor on a lupus patient who is pregnant. These can fight the fetus and cause death or miscarriage in the fetus.

Antiphospholipid antibodies – these can lead to clotting issues, and potentially life threatening things like heart disease, and stroke in patients with increased levels. 1

Serum Complement levels – these tend to be low in patients with lupus and are necessary for fighting infection and inflammation.

Now with all that technical information, it’s important not to forget to refill your prescriptions, discuss medication concerns, and changes in your symptoms. Even something very small, such as a change in location of pain in your body is important for your doctor to know. It may signal a change in your disease, or a medication complication, that needs to be addressed immediately.

Be sure to make all your appointments this New Year. Your body needs it.


  1. 1- Lupus Handbook for Women by Robin Dibner, M.D. and Carol Colman.
  2. 2- Mayo Clinic Website – http://www.mayoclinic.com/health/sed-rate/MY00343/DSECTION=results