Woman left ‘burning from inside out’ after taking pill

A woman has shared how she almost died after taking a medication that left her blind and “burning from the inside out”. WARNING: Graphic

Warning: Graphic Images

A woman has shared how she almost died after a common pill left her “burning from the inside out”.

Back in October 2023, Charlotte Gilmour began taking a new medication called lamotrigine to aid the treatment of her mental health conditions.

Four weeks into starting the new drug, the 24-year-old dance teacher began suffering from a persistent and severe chest infection that could not be cured.

Another month later, she woke up with a painful rash around her eyes that she assumed was conjunctivitis. However, after going to her GP, she was given the devastating news.

Charlotte had not taken the medication before. Picture: Supplied

Charlotte was suffering from an extremely rare and often fatal condition called Stevens-Johnson Syndrome (SJS), a disorder of the skin and mucous membranes.

It is usually triggered by a medication and begins with flu-like symptoms, followed by a painful rash that spreads and blisters.

It can be fatal in many cases, with a high chance of serious complications arising including pneumonia, overwhelming bacterial infections including sepsis and multiple organ failure.

“I always had a weak immune system when I was growing up,” Charlotte, from Auckland, New Zealand, told news.com.au.

“I’d always be catching colds and flus. But nothing as serious as this.

“I began taking the medicine for depression and anxiety. My GP was always very careful when starting new treatments.

There was a real possibility that she could have passed away from the illness. Picture: Supplied

Her body was filled with blisters. Picture: Supplied

“I’d tried different antidepressants over a few years and nothing seemed to help much. About a month in, I got sick with a chest infection.

“I went for X-rays, blood tests and took antibiotics but it was persistent. Then one day I woke up with a rash and thought it was conjunctivitis.

“But it turned out to be the start of a nightmare.”

Charlotte’s small rash soon exploded over her entire face and body, bubbling up into angry, painful blisters that caused her to be in the worst pain of her entire life.

Describing it as like “burning from the inside out”, she recalled how she just “went numb” from the debilitating agony her body was going through.

The painful sores spread all throughout the inside of her mouth, leaving her unable to eat and needing a tube to be able to get nutrition.

Her bladder was also full of blisters and she needed a catheter to be able to urinate.

“I was aching and burning, in so much pain,” Charlotte recalled.

She was left traumatised by the ordeal. Picture: Supplied

Charlotte had never even heard of Stevens-Johnson Syndrome before. Picture: Supplied

“Over the next few days, my rashes completely bubbled up and turned into blisters. My right arm and mouth seemed to be the worst.

“I could not eat anything as my gums were dying and sloughing off, so I had to have a feeding tube along with a catheter. I was in so much pain.”

When Charlotte was officially diagnosed with Stevens-Johnson Syndrome, she said she was baffled as she had never heard of the illness before.

However, after talking to her doctors, she was hit with the terrifying realisation that she may not survive.

“I knew death was a real possibility,” she said.

“It scared me so much. I tried not to google too much about it so I could not get too in my head.

The pain was so bad she felt like she was burning from the inside out. Picture: Supplied

“My medical team were good about not scaring me, while telling me the facts. But I knew the basics of what was going on.”

Charlotte her lost vision temporarily due to the amount of blisters that were forming in her eyes.

She explained that she could hardly sleep, once even going five days without it, as she was terrified that she “may never wake up”.

Throughout the entire ordeal, she was in constant, excruciating pain.

“I couldn’t look at myself in the mirror,” she said.

“I knew I’d lose it emotionally if I saw my reflection too much. I needed to be as mentally strong as possible to survive it.

“I would take photos, or get my mum to take photos, as I knew when I was better I’d want to see the progress.

“The pain was wild, the rash was scolding hot. It was like if you accidentally burned yourself with the iron, but all over your body.

She felt like she had been burnt all over. Picture: Supplied

Her eyes and mouth were full of blisters. Picture: Supplied

“I was put on a fentanyl and ketamine pain pump for three weeks to keep the pain under control, but even that struggled to do the trick.

“The next step would have been an induced coma, but I begged mum for that not to happen.”

There is no cure for Stevens-Johnson Syndrome, but a patient can be made slightly more comfortable with a mix of steroids and pain management.

The only option is to let the illness run its course and for the hospital to do their best to keep the patient alive.

Charlotte remained in hospital for 30 days straight until she was finally allowed to leave and recover from home.

While she is doing much better today, she still suffers from long-term side effects, such as occasional flare ups and new blisters appearing in her eyes when she gets run down.

Charlotte is sharing her story to help raise awareness. Picture: Supplied

She is sharing her story to help raise awareness of Stevens-Johnson Syndrome and urges anyone with similar symptoms to seek help from their GP.

“SJS is a real risk when taking any new medication,” she said.

“It is rare, but it happens. It’s so important to be aware of any odd reactions within your body.

“I'm trying to move on from the trauma of it. I am now working as a recording artist in Auckland and I’m working on releasing my own EP, which is exciting.

“I’m just so thankful to be blessed by an amazing family and had the best care team possible. The nurses all treated me like their child.

“I am beyond grateful to be alive today.”