This is my good friend Catherine. I interviewed her for the Q&A about a month ago. She has lupus, a chronic condition she will have for the rest of her life. Lupus is often called the invisible disease because much of the suffering is not necessarily visible to all. This week she writes about medication and lupus.
People with lupus take lots of medication. I easily take over 20 pills each day, which can create an adventure in and of itself. A few of the different types of medicine used to treat and manage Lupus:
- Aspirin
- Anti-Inflammatories
- Acetaminophen (Tylenol®)
- Ibuprofen (Motrin®), naproxen (Naprosyn®), indomethacin (Indocin®), nabumetone (Relafen®), and celecoxib (Celebrex®).
- Corticosteroids (also known as glucocorticoids, cortisone or steroids)
- Antimalarials
- Immunosuppressives (Immune Modulators)
- Cyclophosphamide (Cytoxan®)
- Methotrexate (Rheumatrex™)
- Azathioprine (Imuran®)
- Anticoagulants
- Monoclonal antibodies
- Benlysta (belimumab, formerly called LymphoStat-B™)
- Repository Corticotropin Injection (H.P. Acthar Gel)
As you can see, there isn’t just one medication for lupus. When taking many pills, it can be hard to keep up with it all. As I mentioned in previous columns, you have to just laugh to keep going. What else can you do in this situation? Here are a few funny things I’ve done or have had happen to me:
- You’ve looked for your sun hat while wearing it.
- You have to count the amount of pills left in the bottle to tell whether or not you remembered to take your pills that day.
- When you know another month has passed, only because it’s time to refill your meds!
- You’re embarrassed to admit it’s because you’re lost, 3 miles from home.
- Your husband calls you by your Native American name “Dances with Lupus.”
This is just the tip of the iceberg. In my conversations with other Lupus sufferers, there are so many other medications. I know that I take at the minimum of 22 pills a day. All combined creates a totally new drug with all the side affects you can think of.
With there being so many different types of lupus, medicine can be totally different combination. It can be very frustrating to have a doctor visits and have them tell you that they would try a new treatment. It’s hard not to feel like a lab rat when trying to treat your particular type of lupus.
In the words of Mary Poppins” a spoon full of sugar make the medicine go down.” True words!!
