Switching DMTs: I'm Hopelessly Hopeful
Living with a chronic illness like multiple sclerosis (MS) requires you to maintain a certain level of hope, motivation, and perseverance. While I'm sure that there are many people who don't struggle with this too bad, I know that there are a lot of people who, justifiably so, do at some point or another. I'm definitely one of those people despite the fact that early on in my journey with MS, I definitely had an abundance of all three qualities. But after a while of relentless MS attacks and feeling like all the hard work I was putting in wasn't producing satisfactory results, those qualities of mine seemed to slowly go into hibernation.
But I've finally started to feel them re-emerge from their slumber deep within my brain.
Going down the list of MS disease-modifying treatments
My MS was always, according to the many neurologists I've had, really aggressive and somewhat resistant to most of the treatments I've tried over the years. This led to me getting to sample a little of everything at the DMT (disease-modifying treatment) ice-cream shop. One scoop of Copaxone, a scoop of Rebif, Tysabri, Aubagio, Lemtrada, Zinbryta, and finally, Ocrevus. I'm excluding all the alternative treatments I've tried between them as well as medications used to treat relapses.
Which MS therapies worked for me
Of all the MS therapies I've tried, only one felt like it actually made a noticeably objective difference for me. That therapy was Tysabri. But before I go on, don't forget: what works for one person doesn't work for all people. This was just what really worked for me. Anyway, not only did Tysabri prevent me from having a single relapse for the two years I was on it, but it seemed to help reverse quite a bit of my disability.
I was doing well on Tysabri until...
I was extremely active, did a lot of traveling, and moved out of state where I got a new job. My outlook on life was looking good, but then I started experiencing a relapse, tested positive for the JC virus (the thing that can lead to PML), as well as positive for neutralizing antibodies. I'll spare you having to read my explanation of what that all specifically means and instead leave you with the CliffsNotes version: basically, I had to stop Tysabri as it was no longer working for me.
One crazy roller coaster drop
And so began what I would consider being the largest drop in the emotional roller coaster ride that is life with this chronic illness that I've so far experienced. Everything in my life seemed to be rocketing downhill. I had to move back to California, my level of disability quickly rose, and every treatment I subsequently tried did nothing to get me back to anywhere near where I was during my "Tysabri years".
Trying again and again to find a DMT that worked for me
At first, I was really determined to start a new treatment and turn things around. I mean, I've come back from worse, so why wouldn't I think I could do it again? Well, after all the let-downs of each of the promising new treatments that I had tried upon their approval, my capacity for hope and my optimism started to erode. I started losing hope that I would ever get back to what I thought my baseline was. I pretty much accepted that this was my latest new normal. Why oh why did Tysabri have to stop working for me? I would have given anything to be able to use Tysabri again!
The risk of immunosuppressive medications during a pandemic
Roughly 5 years later and we enter the COVID-19 pandemic. Among the many, many, reasons this novel virus has given the world, especially those of us living with an underlying illness, to be anxious, stressed, and fearful was the fact that my MS treatment might be making me more susceptible to getting sick. Surprisingly, my neurologist (who usually seems to downplay the risk of immunosuppressive medications) approached me with this concern before I could even bring it up.
Going back to Tysabri?
He asked if I would be willing to go back on Tysabri (despite my apparent JC virus status) if I tested negative for those neutralizing Tysabri antibodies I mentioned testing positive for 5 years ago. I don't know why, but I didn't realize that was even a possibility! Was it really possible to be able to go back on it? I immediately became excited!
Leaving the house for the antibody test
Considering how well Tysabri worked for me in the past, might it possibly give me the opportunity to take charge of my health again? My life? I couldn't say yes fast enough, and the hope this brought me gave me the courage to finally leave the house and enter the world of scary germs so I could get tested for those stupid antibodies that made me quit Tysabri in the first place.
A little hope and motivation to cut through the red tape
About a week later, I got the results. I tested negative, which means Tysabri is a go! Usually, I hate having to do things like calling my insurance, filling out and submitting pharmaceutical forms, signing up for yet another co-pay assistance program, and dealing with the specialty pharmacy, but not this time. This time I was pumped to spend the day making phone calls and waiting on hold! It's been a while since I've gotten to run on the premium fuel called hope!
A little doubt and pessimism
As motivated and hopeful as the idea of going back on Tysabri makes me, I still sometimes find myself in the "cautiously pessimistic" mentality I've so often lived in these past few years. What if it's not like before? What if the damage done by MS since I first stopped Tysabri has just had too much time to "cure" like a bucket of cement? Maybe I only had such an amazing recovery the first time around because I started this therapy when that "cement" had just been poured? As if the damage from MS was still "fresh" and easily reversible?
A lot of eagerness
Well, time will soon tell. Regardless of whether it's as effective as it once was for me, I'm eager to get started, and I'm enjoying this feeling of motivation. I'm enjoying the benefits of feeling hopeful despite the brief appearance of pessimism I still get regarding my renewed hopes of regaining control over my MS. It's been too long.
Note: I'm not endorsing or opposing any MS treatments. Just because I had a great experience with one DMT doesn't mean all people will. There is a good chance that the medications that didn't seem to do anything for me are doing wonders for others. We are all different. This is just my experience with treating MS.
Have you ever heard someone say the following: