Learning to live with Lupus

She had to call her a friend who lives in Mutundwe to help her open her door in Lunguja. She had lost her grip and could not open the door even when she had the keys. Before that, she had to ask someone to help her open a bottle of water. She still does. 

Even when the sun is scorching hot, she will be seen donning a jumper with a hoodie. The fear of getting cold or being hit by the rain terrifies her horribly. Even with a brown skin, she must wear sunscreen before she steps out or she will develop a rash or her skin would become purple.

But Peninah Nantume is not alone. Many have died with a late diagnosis or no diagnosis at all. The fact that lupus disease is incurable and can change anytime leaves the sufferers disillusioned. Even the treatment is trial. Many times the medicine at some point stops working or becomes destructive and has to be discontinued.   

Mariam Nasejje was diagnosed with lupus about nine years ago. The 38 year-old struggled to find the diagnosis and for about five years, she was bedridden yet doctors could not find what was wrong with her.

“I went to several hospitals and the doctors only managed symptoms but could not get to the root of the problem. I had fatigue, severe anaemia that would get me transfused twice a week, lost my hair and lost a lot of weight,” she says.

A friend then recommended that she meet Dr Mark Kaddu, a rheumatologist in Mulago Hospital, who, after assessment and several tests, asked that her blood sample be taken to South Africa in 2015.

“I was told that I have a rare chronic autoimmune disease called lupus. After the diagnosis, the doctor told me that it was going to be on treatment for the rest of my life.”

From her experience, Nasejje started the Lupus Initiative Uganda a psychosocial social support group that brings about 30 people living with lupus. She remarks that since lupus manifests differently among people, many are misdiagnosed for rheumatoid disease.

She says, “Lupus affects everyone differently. Many people are misdiagnosed as having rheumatoid disease but even after treatment they do not get better. Many of them are referred to me by friends and I am happy that some have finally found  a proper diagnosis.”

Since the diagnosis, her symptoms have been managed and the days are better. She was even able to conceive and has two children aged seven and four.

“The days after starting medication are better. Luckily, my lupus did not affect me during pregnancy because it was under control. Conceiving and being able to give birth is one of the dreaded processes by people living with lupus. Many of them get multiple miscarriages and are not sure what would happen if they conceived,” she says.

According to the Centers for Disease Control and Prevention (CDC), women with lupus can safely become pregnant. If your disease is under control, pregnancy is unlikely to cause flares. However, you will need to start planning for pregnancy well before you get pregnant. Your disease should be under control or in remission for six months before you get pregnant.

It is recommended that women living with lupus should talk with their rheumatologist about the risks of pregnancy and lupus, to improve their chances of having a healthy pregnancy and delivering a healthy baby.

CDC also warns that women with lupus and antiphospholipid antibodies must avoid oral contraceptives, due to an increased risk of blood clots. Some medications used to treat lupus can interfere with birth control pills. Your gynecologist and rheumatologist can help you find the right option, considering your needs.

Men too suffer the disease

In 2019, Oscar Piddo started falling sick but even with treatment, there was no relief. He got an ulcer on the mouth in January but until November, it had not healed. 

The 26-year old was told to do a biopsy but he did not have cancer.

“A friend told me to apply honey and it healed at the end of the year. In 2020, I had a terrible stomach pain with blood in my stool, I was weak and sometimes would pass out due to low sugar levels. The doctors suspected HPylori, cancer but all tests were negative,” he recalls.

He then developed a butterfly rash but it was not very vivid the way it would be on a white person. He also developed wounds whenever he was exposed to the sun. Piddo knew about lupus from Selena Gomez so he asked his doctor to carry out a test for the disease.

“The doctor hesitated and told me it was a disease that affects women. However, when I did an antinuclear antibody (ANA) test which checks to see if you have an autoimmune disorder, it tested positive.”

Piddo now needed to see a specialist but had spent most of his fortune in finding a diagnosis. His family also struggles financially. He finally met Dr Anthony Makoba, a rheumatologist and with support from his sister, he started medication on which he spent shs5,000 daily.

His sister’s work contract ended so he was not able to take his medicine for a month. “My lupus became worse and had to get stronger and more expensive medicine (methotrexate) on top of hydroxychloroquine. The medicine gave me all the side effects of chemotherapy except hair loss.”

With time, his body got used to the medicine and got better. However, he gets problems with speech, completely forgets things when he gets a flare up and must do liver and kidney function tests every three months. As a member of the Butterfly Initiative, Piddo was fortunately given sunscreen but still he cannot stay in the sun for long and struggles financially since he does not work.

Living with the disease

Nantume (also known as Pennie), a lupus warrior and founder of the  Purple Butterfly Foundation remarks that even with the diagnosis and treatment, the disease does not get better.

“The disease is lifelong. I have to take medication all my life and the challenge is that the condition keeps changing. You may buy medicine thinking you will be taking it all your life only to go back to the doctor to say that you don’t need it anymore,” she says.

The medicines are expensive and depending on the symptoms you have, you may have to take about four to 8 tablets daily. Nantume takes four tablets a day and each costs Shs3,500. This equates to shs420,000 per month but this does not include the weekly supplements and the hospital bills when she gets a flare up.

Nasejje says that many people living with the disease are not even able to buy these medicines every day so they have to depend on donors to buy the medicine. This is because there is no specified clinic or department that caters for this rare disease.

People living with lupus also suffer from chronic anaemia so they have to take folic acid daily. You may also need an anti-inflammatory, immunosuppressant, some vitamin B12.

Sometimes people living with lupus have self-isolation tendencies because they feel no one understands them. When you have lived a normal life, being diagnosed with lupus makes you feel useless. 

“I use stickers as reminders for all the things I have to do. I have learnt to live with brain fog. When I sleep or get a flare up, I forget most of the things that I had to do. Even when I try to get a job, focusing is very hard. Life really changes,” Nantume notes.

There are several complications related to lupus and its treatments. They include: skin scarring, joint deformities, kidney failure, stroke, heart attack, bone fractures, pregnancy complications, hip destruction and cataracts.

Management & treatment 

According to Dr Kaddu, people living with lupus may need a combination of these medicines: Prednisone,  Hydroxychloroquine ,  Folic acid, Vitamin B

Methotrexate , Bloood pressure drugs, Amlodpine, ethydopa, Captopril, Calcium. 

After being diagnosed with lupus, there are several lifestyle changes you may have to incorporate. These include using sunglasses, sunscreens, umbrellas.

One is also susceptible to frequent infections, eye problems, kidney and liver problems. One therefore has to go for checks frequently. 

Long term use of Hydroxychloroquine causes depression and hallucinations. 

What is lupus?

Lupus is a chronic disease that occurs when your body's immune system attacks your own tissues and organs (autoimmune disease). The disease affects more women than men and puts them at a higher risk for heart disease and osteoporosis. It can affect the joints, skin, kidneys, blood cells, brain, heart and lungs.

Its symptoms vary from one person to another but can include fatigue, muscle and joint pain, swelling, a skin rash that forms a butterfly shape, hair and weight loss, sensitivity to the sun and fever. These can periodically get worse (flare up) and then improve.

“While there is no cure for lupus, current treatments focus on improving quality of life through controlling symptoms and minimising flare-ups. This begins with lifestyle modifications, including sun protection and diet. Further disease management includes medication such as anti-inflammatories and steroids,”CDC

There are several different types of lupus according to the CDC: Systemic lupus erythematosus (SLE) is the most common and most serious type of lupus. SLE affects all parts of the body, Cutaneous lupus erythematosus, which affects only the skin, Drug-induced lupus, a short-term type of lupus caused by certain medicines and neonatal lupus, a rare type of lupus that affects newborn babies.
World Lupus Day is celebrated annually on May 10. This year's theme is 'Make Lupus |Visible.'