Determined to fight dermatitis
Clinical trials gave Michael Moore a new perspective on eczema and boosted his will to volunteer for science.
Being young ought to be about being able to enjoy oneself, hang out with friends and have a good time. 26-year-old Psychology student Michael Moore has spent a good part of his youth wrestling life with severe dermatitis instead. For instance, when others were basking in the sun, gardening, going to festivals or working outside, he had to go out of his way to stay in the shade to cope with his ailment.
As a fairly recent member of the British Research Panel, Michael Moore has been kind enough to open up and share his experiences as a patient and his reasons for volunteering in clinical trials.
“I’ve been changing which side of the street to walk on, taken longer routes to stay in the shade, worn thicker clothes even in summer. Sunscreen was difficult to use with steroid creams and moisturizers, and the eczema itself made the skin more liable to overheat,” Michael Moore told us.
One problem of diagnosing Actinic Dermatitis, an aversive biological reaction to light, is that it may also be caused by medications such as Methotrexate, which Michael was prescribed during his testing.
“The Methotrexate treatment for AD has a known side effect of inducing light sensitivity, a variable ignored by doctors, but noted by a clinical researcher. In 2019, my infections and antibiotic treatment required me to stop the Methotrexate,” remembers Michael Moore.
The pause in treatment had an unexpected benefit.
“At the height of summer, my skin was normal without any medication or precautionary measures. By September, I had to go back to steroid treatment and antibiotics again, and was suggested going back to Methotrexate as well,” he says.
Moving on to clinical trials
“Most doctors were very hesitant to let me try biological agent Dupixent, a monoclonal antibody. Having tried most mid-severe range immunosuppressants the NHS had to offer, I know they may cause severe side effects, worse than Dupixent. But I was keen to try biological agents, signing up to a trial of a new biologic treatment similar to Dupixent,” says Michael Moore.
“I feel that this option for patients, particularly those with chronic conditions, not only allows them to explore real alternatives, but also shows medical professionals that the patient is determined to push for treatments not immediately offered because they are new” he says, exemplifying precisely the determination and support many patients show the medical research community:
“The trial I’d signed up to required a six hour fortnightly trip, but I was still determined to try the new medication. Mostly because I think that biological agents are a huge step forward in fighting autoimmune diseases, instead of using the same old drugs with potential severe side effects that we’ve been trying to manage symptoms with for decades,” Michael Moore states.
The future lies in studies
The story of Michael Moore as patient is bigger than getting by in spite of a troubling disease and wrong treatments. It is also a story being determined to look for relief and for treatments that may benefit others than himself.
“Choosing a trial shows a dedication to fighting a disease not only for yourself but for all of us, even if the medication is found not to work as well as expected. It is essential to try, because new methods can change patients standards of living greatly. After being on Dupinext, I have a much greater control over my condition that was causing not just daily pain, but hourly agony. I was scratching until bleeding every hour, at best every four hours. Other immunosuppressants would cause stomach pains, reactive arthritis or allow a simple cold to keep me in bed for a week. At 24, I had whooping cough for months on end,” reveals Michael Moore.
His hopes for medical trials in the future are high. Most of all, Michael Moore wants clinical studies of all kinds to be seen as something completely ordinary. And he wants more patients like himself to tell their stories.
“I imagine trials to be treated as something normal like vaccinations or washing with soap. Personally I’m keen to see medical trials move alongside cognitive therapies to explore the effects of medicine and conditioning. I’d also like to see more personal testimonials; honest stories from patients that tried a drug. Maybe it worked, maybe not, but they were part of something bigger than themselves,” he says.
Being interested in medicine and particularly psychoneuroimmunology, Michael Moore was reading research articles on biological agents, leading him in the direction of clinical trials. He’s a little concerned for patients less keen on researching themselves, trying to find studies that might be relevant to them.
“It’d be good to see adverts for trials placed openly in the NHS and in public areas. We also need more reports and news done by organisations like this to build honest answers from those who have chosen to try medical trials,” concludes Michael Moore.
At the British Research Panel and James Lind Institute, we will work hard to do so.