On Saturday morning, January 6, 2024, I read a 32-word update from Margie McGuiness (Lismore, New South Wales, Australia). It was an update of a December 7th update of a post.

“My beautiful and strong husband passed away last night from complications with PRP. He fought so hard and so bravely and I can’t even begin to believe that his struggle is over.”

Margie had joined our PRP Support Group on October 15 and then added her husband, Brian the very next day.

As I reread Margie’s original post from December 7, 2023 and the update of her husband’s PRP journey, I realized his  journey that had taken a devastating turn for the worse. She wrote:

“This really is the cruelest of cruel diseases!

“My husband has only been diagnosed for about four months. He started with methotrexate, but that lasted only six weeks. The side effects were horrible. No appetite, extreme tiredness to the point of only being awake a couple hours a day. This made him lose weight and so much muscle!

“His feet have developed an infection from the deep cracks in the bottom of his feet, to the point that he has to have a toe removed because the infection is now in the bone.

“We can’t believe this is happening and are hoping and praying that it’s just one toe!”

And then Margie offered sage advice: “Watch out for infection. It’s scary how quickly it develops.” According to the Mayo Clinic “methotrexate can lower the number of white blood cells in your blood, which increases the chance of getting an infection.”

She later updated her post with even more distressing news.

“Brian’s foot was amputated today as the infection was too much. It’s a long road ahead.”

By her own admission, Margie was “a bit numb and shocked that this has happened, like a nightmare that is reality…but also not surprised. Brian was, in fact, very ill.”

According to Margie, Brian had been diagnosed with atopic dermatitis (eczema) for many years. Atopic dermatitis is a chronic skin disorder that causes inflammation, redness, and irritation of the skin. 

Over the years only Brian’s torso had been effected. In August, 2023, however, a dermatologist specifically looked for PRP. Still, the findings came back inconclusive. Atopic dermatitis remained the official diagnosis.

In late September, however, the inflammation spread to his whole body.  While Brian was in the hospital, a dermatologist did yet another biopsy and she actually went to the lab and looked at the slides herself. While the result was yet again inconclusive, the diagnosis of atopic dermatitis was abandoned in favor of “either psoriasis or PRP”,  Based on this revised diagnosis, Cosentyx^® was prescribed.

Things were looking up,” Margie recalls.. “You can imagine the joy we felt when we finally had the “either psoriasis or PRP” diagnosis and knew there was hope. And then we found the PRP Support Group on Facebook. It’s crazy the relief we felt.”

Unfortunately Brian’s journey took a terrible turn for the worse.

“He was such a brave fighter, and took all the side effects seemingly in his stride. I honestly don’t know how he did it. The last month has been torture. He was scheduled to have his infected toe amputated, but by the time that day came, Brian had developed a blood clot in his abdomen and his foot had to be amputated at the ankle. Ten days later they amputated what remained below knee.”

When it comes to treating PRP every, PRP patient and caregiver comes to understand the reality of the mantra “What works for one doesn’t work for all.”  We all understand that PRP is predictably unpredictable and every PRP journey is unique.

Margie recalled that Brian took acitretin for six weeks but didn’t like the loss of hair. As an alternative he was  prescribed methotrexate, but that made him weak and unable to function or eat. And that, she believes, was the start of the downward spiral.

Married for 25 years and together for 31 years, Brian and Margie have an incredibly supportive family including five children between them and three grandchildren. When I reached out to her yesterday to discuss writing this In Memoriam, the family was there in full force supporting Margie and remembering Brian — the way families do.

Brian and Margie were looking forward to retirement and exploring Australia together. He was still working for NSW (New South Wales) Trains and reluctantly took sick leave on April 23, 2023. They planned to retire when he got better. He never did get  to retire and ironically still had six months of sick leave left.

Brian McGuiness was a man I wish I had gotten to know. He had been a member for less than three months. According to Margie he was a bit of a home body who loved gardening and spending time with his kids and two dogs —  Bella, a black lab and Tommy, a border collie.

In spite of her grief Margie wanted to express her special gratitude to two dermatologists: Dr. Hsien Chan and Dr. Prue Grampm, and “every single ICU nurse” at Lismore Base Hospital.

Her parting words to me: “Brian fought so hard and bravely against the symptoms and the effects of the medications. His children and I were with him at the end and it was very peaceful.”

It didn’t take long for Brian’s kindred spirits here in the Land of Hope to reach out to Margie with thoughtful messages of support on the death of her husband.

Our kindest thoughts continue to go out to Margie and her family.