Are you interested in becoming a guinea pig for scientific research? I never was, until something dramatic happened to me to change my mind. Here’s a little background.
I have lived with relapsing remitting multiple sclerosis for 15 years. I hit the lottery, the one you don’t want to hit. I was diagnosed at the age of 20. This was in 2004. I was one of 200,000 people in the USA diagnosed with MS.
Not the lottery I wanted to win, but I was stuck with the prize. There wasn’t any giving it back.
I went on the disease modifying medication, copaxone. I had been given the choice, an interferon that may make me feel sick once a week, OR pricking myself with a needle everyday. The everyday needle prick seemed less painful, with less side effects.
I chose to protect myself from the damages that potential side effects could cause, and the option that I thought would interrupt my life less. That is the choice I have always made. You see, before I was diagnosed, the neurologist told me that he was 95% certain that I DID NOT have MS. Still, they wanted to give me an MRI just in case. The hospital neglected to send the MRI to my referring neurologist. Before my appointment I went to the hospital, and picked up the report and CD at the counter. As I walked down an empty hallway, I casually read the report. The words that stood out to me- multiple lesions in brain and cervical spine. There is a 95% certainty of multiple sclerosis. After that I looked at every medical decision as a cost/ benefit analysis, but despite research I just had a tendency to mistrust unknown.
When you already have a disease, the thought of possibly giving yourself more side effects and damage from medication is a very scary and disturbing notion.
So, I hate side effects, I don’t trust my odds, hence I’ve been weary to start new, investigational medications. So weary in fact that after copaxone stopped working for me, I went 10 years, that’s right 10 years, without being on a DMT.
So why on earth would I choose to be a guinea pig?
You see, 18 months ago I weaned my beautiful boy, Suraj. I spent 5 years being pregnant with and breastfeeding two babies. I was enjoying a gloriously beautiful remission from multiple sclerosis. I was walking beautifully. I was an exhausted Mom, but one that didn’t have to think about MS everyday.
I was scared to start another DMT. My neurologist went through my options with me and we settled on tecfidera. A pill, instead of a shot, and relatively low on side effects. I was having more bad days than good days, but it was gradual. I was going through a good deal of stress in my personal life. However, I had a beautiful summer coming up with a family cruise to enjoy.
After returning from vacation and going into the beginning of the school year, stress continued. I was getting depressed, and I was more troubled by fatigue. What was going on with me?
Then one morning it hit. I woke up with significant numbness in my left side. Then it came to my right side. When I went to my neurologist and failed my 25 step test, she strongly recommended ocrevus. Ocrevus is an aggressive treatment. However, of the aggressive treatments, it has the lowest side effects. It is also a high efficacy drug, meaning it is very good at preventing relapses.
I also learned that I missed the boat on the regenerative medication she had talked to me about the previous spring. My hesitation to start a DMT meant that I didn’t qualify for the trial. This was rock bottom for me. I was in the middle of a horrible relapse, and now I couldn’t qualify for a trial to possibly regrow myelin.
Fast forward nine months. I am doing better. Ocrevus has been a godsend. I still have the numbness and I am still struggling, but I am walking with a cane, not a walker. I did much better on my 25 step test at my neurologist appointments. She told me of another new regenerative medication clinical trial that was taking place. She was very excited about it, and thought I was a good candidate.
This time instead of throwing my hands up and leaving it up to God, I was a little more proactive. I inquired about the trial at my next appointment. Then at my next ocrevus infusion I saw my neurologist’s assistant signing another patient up for the trial. I raised my hand and said don’t forget about me!
The medicine is elezanumab. It is a fully humanized monoclonal antibody. It is not an immunosuppressant, so I can take it while on ocrevus. It’s in phase 2a clinical trial- this means I am a guinea pig being tested both for efficacy and safety. The preliminary safety trial is complete, but now it’s time to see if it actually will regrow myelin. Myelin is the insulation that protects our nerves. It’s like the plastic and rubber that surrounds the wires of your phone’s charging cable. In an autoimmune response, the cells attack the myelin and it becomes stripped. So you’ve got one of those charging cables where the rubber is worn out, and you see the blue and red wires. Maybe you even see a little copper wiring. You aren’t supposed to use it, it’s dangerous, you could electrocute yourself! Don’t be a cheapskate, go get a new cable for God’s sake!!!!
Well, unfortunately you can’t get a new cable in MS. The electrocuting cable is the one you have to use. But maybe that cable can be repaired. Maybe your cells can put that rubber back, heal the splits. Hopefully make the insulation work, the nerves fire, and your phone, or body can get charged and start working again.
So, yes, I raised my hand this time. I signed the paperwork, and if I qualify, I will be an eligible participant for a Multiple Sclerosis drug trial. Am I brave or am I just desperate? Maybe a little of both.
I am a mom of two young kids. I want to be able to take care of them. I care for them now, I want to keep caring for them. As it is they run to me, and if I am having an MS episode I get overwhelmed. They talk to me in excited voices and I just want to be in a dark room with no stimulation. They want to sit on my lap but my legs are spastic and tired. They just want me to play with them. I want to so badly. I can sometimes. I can help my daughter with her homework sometimes. But sometimes I have to escape, lock myself into my room and do a short emergency meditation. I want to do that less.
So here it goes. I am on track. I will keep you informed. I will let you know if this risk is worth it. Hopefully when I win the lottery this time, the prize will be brand new regrown myelin. Maybe I’ll get a body that can walk, run, and hike. And more time to play with my kids. Fingers are crossed. Here’s to hope!