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Chapter 1:
SLE(Lupus)

Chapter 1: SLE (Lupus)

Imagine being a 5-year-old girl who is only worried about friends and what movies to watch. Yet, this five-year-old girl has a rash on her chin. Hi, I am Mikalah Zakah Smith, a 5-year-old girl. I have SLE (Lupus), which was the rash on my chin that was diagnosed by my wonderful pediatric dermatologist, Dr. Gail Faller. Now, 10 years later, I have been allowed to write about my experiences and to teach more about lupus and how it arises and occurs.

Now that you have an idea of what this disease could potentially be, I will explain how it can be genetically or environmentally impacted.

Lupus is a chronic autoimmune disease, in which the immune system attacks healthy tissues and your white blood cells.

What is Lupus?

Lupus refers to a variety of conditions that affect your body. It’s autoimmune, which means it happens when the body accidentally attacks healthy tissue.

There are 4 different types of Lupus

  • Systemic Lupus Erythematosus (SLE)

  • Cutaneous Lupus Erythematosus (CLE)

  • Drug-Induced Lupus (DIL)

  • Neonatal Lupus (Lupus passed down from mothers to newborns)

In this chapter, I will be covering one of these types in simpler terms for better understanding. I’ll also be speaking about my symptoms and experiences growing up with lupus.

Systemic Lupus Erythematosus (SLE)

This type of lupus is what I have; SLE accounts for approximately 70% of lupus cases. It impacts multiple organs and systems throughout the body. Because of this, SLE is usually the more severe form of lupus. The symptoms can vary from mild to severe. SLE (Systemic Lupus Erythematosus) can cause inflammation in the skin, joints, lungs, kidneys, blood, and heart. This inflammation can affect multiple parts of the body simultaneously. My experience with (SLE) Lupus has really changed as I’ve gotten older; my symptoms have become more painful and have affected my body more, although my face rash, known as the butterfly or wolf flare, has been controlled by the tablets, my flare-ups are more inflammatory than rash.

With my situation, my lupus was mainly triggered environmentally; according to my doctor, there was something in the air. Though when we looked at my family’s diseases in the past, we discovered that my granny had Rheumatic fever when she was in high school, and Rheumatic fever affects the joints; it is an inflammatory disease, and having SLE lupus, my joints get affected a lot.

Genetically, though it can be passed down through a variety of genes, no single gene directly affects lupus. The genetic influence is mainly impacted by the susceptibility of genes, inherited variations, or family history. With my family history, from my father’s side, I got the inflammation in my joints from my granny’s Rheumatic Fever; from my mom’s side, I got anemia, and I get my dizzy spells from her. Having SLE Lupus is complicated and confusing, because you don’t really have proper answers to work from. With SLE, you mainly only understand what will happen inside your own body, you get to learn about different medications, and you basically become a legal test subject when figuring out what medication works to maintain your type of Lupus.

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For example, when I was diagnosed at the age of 5 years old, the medication I took was quite different from what I am taking now, even though some of the tablets remained the same. It just depends on the severity of one’s lupus and how an individual can react to their medication.The Basic or more well-known SLE medications include:ChloroquineNaproxenPrednisoneAzathioprineMethotrexateRituximabLupus Medication I take include:Prednisone 5mgMycocept 250gMycocept 500gRamiprilMethotrexate 2,5mg times 5Folic Acid 5mgDiclofenac 50mgCalciferol 50000UPlasmoquin 200mg Prednisone: Prednisone is a medication used to decrease inflammation and regulate your immune system if it is overactive (in my case, it provides me with an “immune system”). Prednisone is used to treat allergic disorders, skin conditions, ulcerative colitis, Crohn’s disease, arthritis, lupus, psoriasis, asthma, chronic obstructive pulmonary disease, and many other conditions.Unfortunately, this is a growth steroid stumper, meaning steroid medication can weaken your immune system, making you more susceptible to getting infections. Avoid being near people who are sick or have infections. Do not receive a "live" vaccine while using prednisone.Prednisone stunts all types of growth in the body, so that means you’ll grow slower in height, you’ll be delayed in puberty, it can affect your eyes and cause thinning of the bones if you take it for a long time. Now imagine taking this medication for 10 years straight… I know you can't see me, but imagine how short I am, having taken this medication for 10 years! 😂

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Mycocept:

Mycocept is used to help prevent your immune system from attacking a new organ after a transplant. In my case, it is to help maintain my organs by keeping them clean and reducing the risk of organ diseases.

Mycocept weakens the immune system and makes immune cells less active. This lowers the risk of your immune system attacking other organs. Increased side effects include only infections.

Excessive Reactions include:

  • Breathing problems

  • Swollen Lymph Nodes

  • Swelling of the face, lips, and mouth

  • Hives

  • Dizziness, feeling lightheaded

  • Stomach cramps

  • LOTS OF JOINT PAIN

Ramipril:Ramipril mostly treats high blood pressure and prevents kidney problems. With Ramipril you should weigh more than 45kg, and the problem with taking prednisone as I mentioned above, it fluctuates my weight, so I lose lots of weight or stay the same weight, causing my intake of Ramipril to decrease or increase a lot, although recently my weight has been better and I’m able to take my meds accordingly.Methotrexate:Methotrexate is a chemotherapy agent and an immune-system suppressant. This medicine is new for me, I was never on it until August 2025, and let me tell you it sucks, because it takes 2-3 months for it to start working, and until then my body aches can get worse. Methotrexate treats people with Arthritis, or Cancer, in my case, I don’t have cancer but the actual drug reduces inflammation, pain and swelling in the joints.The side effects include: 1.Nausea2.Hair Loss3.Allergic reactions4.Unusual bleeding or bruisingUnfortunately, I was put onto Methotrexate because nothing else was helping my Lupus. The tablets are supposed to work within 3 months, well unfortunately we ran into a trial error, the medicine was just making everything worse, increasing infections, body aches, headaches, swelling of lymph nodes, and increasing my arthritis.

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Today 2025/01/10, I went to my dermatologist paediatrician, and she explained that she wasn’t happy with my blood results. Therefore, she is putting me onto a new drug, at the end of October called RITUXIMAB, but there are a lot of precautions and safety measures I have to undergo before the medical aid approves. Currently, I’ve had an “Acute Lupus Flare”, meaning I have ulcers in my mouth, my joints have acted up, my headaches have gotten worse, and I’ve been extremely nauseous, or I’ve been vomiting. With this new medicine, I have to be infection clean, like spotless, and let me tell you why.

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Rituximab:

  • Rituximab is a synthetic (designed and produced entirely in vitro (outside a living organism) to mimic the function of a natural antibody, which is to bind to a specific target molecule called an antigen) antibody (proteins). It targets antigens, compromised immune systems, or diseases. This medicine/drip is in the “Biologics” group of medicines because it’s made from living cells and not just chemicals like most pills.

  • This is supposed to help me by eliminating some of my damaged B-Cells (Flags them for destruction) this will therefore reduce my inflammation. And then hopefully healthier stronger B-Cells will grow. It should take 3 months to start working. The doctors give you one month to do both doses, over 4 weeks, you go for 2 weeks, wait another 2 weeks, then complete the other dose. This will also happen annually to make sure my Lupus is stable.

  • The main uses are for, Cancer/Blood Disorders, or Autoimmune diseases, and it’s a really good Transplant medicine.

  • This Medicine is given through an IV Infusion, usually in cycles (every few week/months) depending on the severity of the disease.

 

Common Side Effects Include:

  1. Fever

  2. Chills

  3. Rash

  4. Low-Blood pressure

  5. Shortness of breath

  6. Increased risk of infections

  7. Headaches, fatigue, and nausea.

   

                Serious Side Effects Include:

  1. Brain infections

  2. Severe infusion-related risks

Safety Precautions:

  • Make sure I’ve had all my vaccines

  • Done a TB scan

  • Taking some steroids to reduce inflammation

In Conclusion, Living with Lupus feels like your’re carrying an invisible weight, but it’s also a learning curb, and a practice of trial and error, allowing for a person to fully understand there bodies. As you have now read throughout this chapter, Lupus is a complex auto-immune disease that continues to challenge patients and doctors. As it is a chronic disease there is no cure, just precautions, ongoing research and a large amount of treatments. Hopefully in the future there will be a cure, but for now we will never know. 

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Here are some of the meds I take:

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