I recently had the opportunity to speak with Jill, a Minocycline phase III trial participant, to talk about her involvement in the study. The announcement about Minocycline – a drug that has the potential to reduce the risk of developing multiple sclerosis in individuals with early signs of the disease – has been a real MS research breakthrough.
We chatted over the phone, her in Calgary and myself in Toronto, about how this drug has potentially changed the course of her life and how she’s feeling today – MS free. Here’s what she had to share.
When did you experience your first MS-like symptoms, and what were your next steps?
It happened in 2010 on St. Patrick’s Day, and I didn’t have the luck of the Irish on my side. At 27, I woke up with numbness and tingling in my hand and didn’t think much of it. I thought I’d slept on it funny, but then the sensation started flowing up my arm. Eventually, I saw a doctor at the walk-in clinic. I had a CT scan and a lot of bloodwork done to rule things out. At this point the numbness had spread to 50 per cent of my body – my left side was numb from the neck down, coupled with extreme exhaustion.
After those results came back, I was sent to the Urgent Neuro Clinic where I saw a neurologist and was ordered for an MRI, which confirmed I had lesions on my brain and spinal cord. It was explained to me that what I was experiencing could be the development of MS.
How did you become involved with Dr. Metz’s minocycline phase III trail?
My neurologist brought up the idea of me participating in this trial. For me, it was an easy decision because I was ready to do anything to prevent myself from receiving a diagnosis of MS. Canadian MS research has come a long way and is very advanced these days, so I trusted that this trial was something that could potentially change my life for the better. Also, how else are we going to learn anything, or extract more information on certain diseases if we don’t get involved with studies like this one, when we’re presented with the opportunity.
What was your experience like while participating in the trial?
First off, I’m so thankful that the trial was at the stage it was at when I developed my MS-like symptoms and experienced clinically isolated syndrome (CIS). I would have paid thousands of dollars for them, which I’m not in the position to do. The only available drug options for CIS were very expensive – I was happy to be part of this trial for that reason alone!
I went through all sorts of tests before they accepted me into the trial. Once they accepted me, I began taking a pill that I would take twice daily. You don’t know if you’re receiving the placebo or the actual drug, as a participant. I was experiencing a skin breakout at the onset though, and it cleared up right away. I had a feeling I might have been taking the drug. It’s really interesting how this antibiotic that’s been used to treat bacterial infections like acne for years, might be able to help treat early-onset MS because of its anti-inflammatory and neuroprotective properties.
Once they’d completed the trial, they were able to confirm that they had given me minocycline.
How has your health been following the trial, and are you still taking minocycline?
From the time I started taking minocycline seven years ago, I haven’t had any other MS-related symptoms. I went off of minocycline five months ago because my doctor recommended I give my body a break from the antibiotic for a bit, but I’ll be taking it again shortly. Six and a half years is a long time to be on anything, so I think taking a break was a good idea for me. I feel that this drug has really helped me from progressing toward a MS diagnosis. The rate of people going from CIS to MS is very high, and I’m so fortunate that this drug seems to have stopped any further progression of MS in its tracks. I’m still undiagnosed and I strongly believe that it’s because of this drug.
What was it like being part of such an important discovery?
It was such an honour that they asked me to be a part of the announcement about the success of Dr. Metz’s clinical trial involving the use of minocycline to help stop early-onset MS. I met Dr. Metz during the media day in Calgary, and she was wonderful. Listening to her speak about the study in detail, and the results that her and her team uncovered was fascinating. A couple of major news outlets interviewed me about my experience participating in a trial. That was a little intimidating.
Coming out about my involvement in the trial publicly was very different than chatting about it with friends over dinner. An old friend of mine in Toronto reached out to me saying that she’d seen me on the news. She was happy to hear that I was healthy, and didn’t know that I had gone through this. My family and friends know about my MS scare and what I’ve done to keep it at bay, but I’ve never opened up about it on social media or anything like that. I’m not shy about it, but I feel like there’s still a stigma around having an illness like MS.
Why have you withheld your last name when speaking about your experience in the trial?
For career-related reasons, I like to keep my last name out of the public eye. It’s not that I’m looking for another job. It’s just that you never know if an employer will hold a condition like MS over you. If they will not consider you for a position solely based on your MS. It’s one thing to tell your friends and family. With work, there’s often still a stigma attached to having MS. In my case, my current employer has been nothing but supportive and I am very thankful for that.
For more information about minocycline, please read our MS Update and our FAQs regarding this treatment.
MS Navigators are available Canada-wide, Monday to Friday, 8 am to 8 pm eastern time. Navigators can help you access information and support tailored to your needs. They can also connect you with your local MS Society representatives. You can reach an MS Navigator by phone at 1 844 859 6789 or by email at firstname.lastname@example.org.