That’s the one word that Gary Ho uses to sum up his clinical trials experience. After living with gout for more than 25 years, Gary now hasn’t experienced a gout flare in 13 years, thanks to the treatment he received from this clinical trial.
A Frustrating Journey
While he is living flare-free now, Gary remembers years and years of trying to get treatment for this painful condition. In 2010, he recalls, he reached rock bottom.
His gout was so severe that he used a wheelchair and crutches to get around. He couldn’t socialize with friends. He couldn’t enjoy being a dad. With his quality of life totally gone, Gary resolved to do everything he could to get this disease under control.
He made an appointment with a rheumatologist, Dr. Christopher Parker. At first, they tried lowering his uric acid level through allopurinol and febuxostat. He remembers feeling devastated that his uric acid levels never dropped below eight mg/dl.
That’s when Dr. Parker told Gary about a clinical trial opportunity for an infused medication called pegloticase. Seeing as Gary wasn’t responding to traditional treatment, Dr. Parker explained, he was the perfect candidate.
Joining the Clinical Trial
After careful consideration, Gary signed up. He began visiting Dr. Parker’s office once every two weeks, when he received an infusion for six hours at a time. This process lasted nine months.
It wasn’t easy at first.
Gary recalls that, during the first three months, he actually experienced more gout flares. He even called Dr. Parker to say that he didn’t want to move forward with the trial. Dr. Parker encouraged him to stay with it, explaining that “things will get darker before they get better.”
So Gary did, and he eventually started to feel relief from the treatment. Now, after living with gout for decades, Gary has his condition successfully managed.
Advice for Patients
Gary’s advice for other patients who are considering a clinical trial? “Be your own advocate.”
If your doctor hasn’t been able to help you diagnose or manage your gout, seek a second opinion. If traditional treatment isn’t working, talk to your doctor about clinical trials.
Gary suggests asking the following questions to get started:
- Where do I go for the trial?
- How often do I need to visit?
- How long does the trial last?
- What is participating in a trial like?
- Can I stop the trial if I’m experiencing side effects?
He encourages patients to bring all their questions, no matter how big or small, to their doctor. “They are there to help you, not judge you,” Gary explains. He credits Dr. Parker with walking him through his questions and encouraging him through the entire trial.
“I feel lucky that this clinical trial is part of my story,” Gary reflects. “It gave me a new beginning.”