People say “No news is good news” when it comes to life with multiple sclerosis. This is because MS is a chronic and debilitating disease and so, more often than not, no health news equals stability and normality.
For me, this type of thinking took time to adapt to — That’s because I find freedom in spontaneity while stability appears more as routine, which brings forth anxiety. Yet, I have come to realize the opposite with multiple sclerosis — I, too, want a no-news in regards to my health.
For those new here, I want to recap my MS journey: In 2012, I was diagnosed with multiple sclerosis — a disease I could not even pronounce and a disease that still has no cure. Even though three doctors encouraged me to receive medication to slow the progression, it took a painfully long time for me to realize this. To say simply, I felt if I admitted I needed medication that meant I also admitted I had a disease and I was too strong-willed to accept that. Therefore, years — full years — slipped by so that four years and one month after my diagnosis, I finally realized medication held hope.
I started on the self-injecting disease-modifying treatment Copaxone, but my body type had adverse reactions so I was quickly moved to Medication Number Two — the oral pill Aubagio. Aubagio contained convenience in pill form, but my MRI results showed a growing amount of lesions — Lesions means disease progression and, in my case, the progression was both further and faster than my neurologist and I hoped. Because of this news, the strongest form of treatment was recommended and so Medication Number Three was placed on the table — infusions at a hospital. Ocrevus then came into the picture — I started in June of 2019 so I have been on this for about a year and half.
I find my MS journey interesting because I’ve now reached a point in my life where my age, length of diagnosis, and medications combine to form wanted MS survey information that offers up occasional (very small) pay. I have also applied to be on an MS patient advisory board, which is compiled of people who give their thoughts on experiences living with and managing a health condition. I’ll keep you posted on if I get accepted — The rewards of having a serious disease, right?
In truth though, I started my health journey terrified of what the future held . . . and now, here I am — in the ‘future’ from when I was diagnosed. Therefore, as I go on to tell my next updates, I want to remind you to keep in mind two facts: One, I am okay. In truth, I consider myself to be one of the lucky ones because the other fact I want you to remember is that other people with MS have dramatically different stories and this is because no MS experience is the same (based on genetics, gender, age, geographic location, diet, exercise, and more).
Alright, so let’s talk about my health journey updates because there are several . . .
Since Ocrevus, most of my MS concerns are small — They revolve around my skin and hair. As far as my skin, the medication seems to make me break out easily and all the time — and this comes from someone who had a near-perfect skin complexion. As far as my hair, I’ve written before about how my once-straight hair is now wavy — like full-ringlets-at-times wavy. These pictures better show a span of time and change . . .
Along with curls, instead of having extremely thick, strong, and shiny hair — Ocrevus has turned my hair very dry and brittle so it breaks easily and all the time. In fact, if you look closely at the first picture, you can see where a large portion of my hair is missing. Here is a closer look:
Okay, listen — I get it. I’m getting older and sure, hair changes. However, I now have entirely different hair and that change coincided with Ocrevus. The feel of my hair, the shape of it, the thickness of it, and the amount of it — or the decreasing amount of it because my hairbrush can prove this is not suddenly a “change in age, change in body” hair loss. In fact, the amount of loss is competing with Aubagio (see how much hair I loss during that medication).
Overall though, I’m focusing on the positives — I can flip my hair or style it differently to hide the loss and so I have been continuing my Ocrevus treatments. I try to remind myself hair loss is a small price to pay to combat my biggest fear, which is paralysis. Therefore, my most recent infusion was December when I used the hours-long appointment to type about Andy’s and my wedding.
Another update comes at the time the global pandemic took over the world. Months ago — when talk of the virus-vaccine broke headlines — I spoke to my neurologist to gain information. There was growing controversy as to whether people with certain health conditions should be vaccinated, and multiple sclerosis was one of these health conditions. Not to dive too deeply, but MS is an auto-immune disease so this means the body’s immune system essentially attacks itself so further suppressing the immune system — well, some people had some things to say. Anyway, in the hopes that others have the same questions, I want to share what my neurologist recommended:
Everyone should get vaccinated — and this does mean most MS patients.
However, there is a possibility the vaccine may be less effective for patients on Ocrevus — This possibility exists because there is no long-term data on Ocrevus and certainly no long-term data on COVID or a COVID vaccine so truthfully, no one knows what can happen due to the combination. Still though, with the information that is out, it is recommended that patients on Ocrevus get the vaccine.
When to get the vaccine can be key: It is recommended to time vaccinations so that they can be received one to two months before the next Ocrevus infusion. This maximizes effectiveness. Saying this though, if timing is not feasible, it is suggested to get the vaccine when able.
I trust my doctor — We have been in a long-term doctor-patient relationship for almost ten years and so I follow his advice. He went to school for this, he gets paid for this, and he continues to study this. Therefore, I am waiting to get my COVID vaccine. For starters, if the vaccine will not be as effective for me now, I do not want to take it from someone else that could benefit. Waiting, however, is scary because on and off, there have been concerns over securing the first and the second vaccinations. While my job lands me in a higher priority tier, scheduling a shot that falls about a month and a half before my infusion is problematic. At first, availability dates were not visible past a few weeks; now, appointments seem solely week-by-week. For me, I’m looking at scheduling around May, so while I hope we all become more COVID-organized and aware with time, the one truth I know about this pandemic is that there is no certainty so securing two future vaccines feels as if I am testing fate.
The good news — and this is another update — is that I should be okay to wait due to my job’s remote position being approved. This means I am able to work remotely up to the summer.
Speaking of the summer leads to still another update: My next MRI is scheduled for June and these results are ones I’m extremely interested in due to my past MRI results from August . . .
I never had a chance to write about this — or better yet, I felt a bit frustrated by the entire situation and so I did not write about it. At the height of COVID, I had an MRI scheduled. This brought on a range of nervousness because Andy was not allowed to go into the hospital with me and I would be doing just that — going into a hospital where many others pop in and out after I took great cares to safe-guarding myself from everyone. Because of this, I started by delaying my MRI . . . then my hospital delayed the MRI. Apparently, the larger (better for those with claustrophobia) MRI machine was down . . . and then there was no one to operate it. Truthfully though, this news was fine by me because I was still in the wait-out-COVID-mindset . . . until my neurologist prompted me to move forward at another hospital. Long story short, the other hospital was filled with the nicest staff (who also let Andy come in) and every MRI henceforth will be scheduled here. Back to my last MRI results though — These August results are in comparison to the MRI before (that was in March 2019 so a year and a half earlier):
My neurologist said I have no active (meaning current) and no enhancing (meaning the past several months) lesions. However, there was one small new lesion in the back of my frontal lobe on the right. This, though, he believes (and we hope) happened before my switch to Ocrevus.
If this is the case, that would mean Ocrevus is working for my body and that means Ocrevus is slowing the progression of my multiple sclerosis. Truly great news . . . but the only way to be certain is to have another MRI, and that is scheduled for June.
Until then I’ll be keeping my fingers crossed. I hope you stay safe and healthy, too, and leave a comment to let me know what you are doing to stay sane through this challenging-to-stay-healthy time and if you haven’t already, click “Subscribe” at the bottom of our site for the latest updates xoxo
For more information on the disease-modifying treatments discussed, visit the companies’ websites:
For more information on other disease-modifying treatments, see the full list:
National Multiple Sclerosis Society.
Hi. Midaughter. Another honest and informed appraisal. If the Medics approve take the vaccine.. Keep those thoughts positive..! Love and miss you both. XXXX.. Midad.
Hi midad, Thank you for your positive comments — Positivity is infectious so that helps much. I absolutely agree about getting the vaccine and I’m looking forward to when I am able to do it . . . It’s just a waiting game until that time when it will be most effective.
Love and miss you and mimum, too! xoxo
L (and Andy)