I can’t really pinpoint the exact moment I started questioning my treatment. I do know the relapse I had at the end of August that left me with new symptoms was the driving force for more research. Until then, I had not given much thought to Ocrevus.

At the time of my relapse, I was three months out from my last dose putting me right between infusions. It was too soon for me to be in the aforementioned crap gap. Plus, these were entirely new symptoms. Everything I ever experienced in the crap gap was a worsening of old symptoms. As I tip-toed around on numb feet and legs, my first thoughts were, “I am on Ocrevus. How is this happening?” It was then that I started looking back and replaying old conversations in my head.

When you start Ocrevus, your first infusion is divided into two visits. I received my first of those two infusions on May 3, 2021. My follow-up appointment with my neurologist came two days later on May 5, 2021. He came into the room beaming, excited to hear how I was doing on the medication. He was let down to hear, that due to hold-ups with my insurance, I had only gotten the first infusion two days prior and was still due for the second. I told him there had not been any miracles yet. He was still very hopeful, though.

My conversation with him that day went as it had at the visit before in February when we met for an initial consultation. When asked about my symptoms, I told him they were mild. If not for being an active person, I would not even be aware I had multiple sclerosis. In day-to-day activities, I was asymptomatic. I only noticed my MS after a few miles of hiking, walking, or riding my bike. I had mild weakness in my right arm, but it was not problematic.

The following are some of his notes from my first visit with him on February 15, 2021.

History of Present Illness

Shanna is an avid mountain biker and around Nov 1, noted that while on a 16 mile hike, her R leg became weak. Now it is consistent with hiking, every single time. This happens around 3-4 miles into the hike, almost regularly. It worsens as she walks on and then she cannot lift her R leg. After about 15-20 mins, she regains her strength but it seems to come back with exertion, again.

Neurological evaluation

MOTOR: Both proximal and distal muscle groups show N strength.

The muscle tone is normal for age. All reflexes are 2+ and symmetrical. Toes are flexor.

COORDINATION: There is no tremor or pronator drift noted. Rapid alternating movements are normal.. Finger to nose and HTS are N.

GAIT: is narrow-based and normal; tandem gait – no abnormalities in tandem gait

I received my next infusion on May 17, 2021.

I spent the next few months figuring out how to live my new life. It was gradual, but I knew my symptoms were worsening. I was now in physical therapy to strengthen my weakening right leg. My therapist felt I would benefit from an AFO and referred me to an orthopedist. I was still trying my best to do the activities I love so much, but it was getting harder and I was spending less and less time outdoors.

I brought my worsening symptoms up to my neurologist at my next visit. At my prior appointment, according to his notes, I had reported being able to walk up to four miles before my MS became symptomatic. That number was now down to half a mile. I also, for the first time, tested positive for nerve damage on the left side of my body. I was devastated and in tears. He explained this is normal for MS and not to be concerned.

The following are notes from my visit with him on October 20, 2021.

HPI

Shanna is a 43 y.o. female presenting with follow-up for MS. Ocrevus infusion done in May without adverse effects. Since May reports some worsening of symptoms, continues to experience foot drop, is seeing PT and orthotics. Otherwise currently experiencing weakness of the right side with activity. Feels that she can now walk only 0.5 miles without experiencing weakness. Reports some urinary hesitancy at night and mild urgency during the day though states this is very mild and overall not concerning to her.

Motor

Strength: 5/5 on the left side throughout, 4+/5 on the right with increased weakness on sustained motor activation.

Reflexes

Deep tendon reflexes: 3+ throughout.

Right pathological reflexes: Hoffmann’s absent.

Left pathological reflexes: Hoffmann’s present.

Coordination

No ataxia noted with finger-nose-finger or heel-to-shin testing.

Gait

Narrow Based.

#RRMS

– Patient previously diagnosed with MS based on MR Brain and spine as well as lumbar puncture.

– Started on ocrelizumab, underwent initial infusion in May of this year without adverse effects.

– Ms. Johnson does report ongoing progression of symptoms over the last several months.

– Labwork performed today including CBC and CMP without abnormalities.

– Will continue ocrelizumab for now, due for next infusion in November.

I received another infusion on November 19, 2021.

By my next appointment, my mental health had significantly declined. I was barely doing the things I cared about. Walking had become too difficult to hike on a regular basis. If I could muster the energy to attempt a few miles in the woods, it would end in tears of frustration and grief. I no longer got joy from bike rides. My right side would give out and leave me pedaling with one leg. My right hand would be too weak to pull the brake lever. Spring was blooming. The outside world was coming back to life and all it did was depress me more. I would take my dog for a walk and cry because he had to settle for a short trip out and back because I could not walk further than my neighborhood.

I was in a dark place for my follow-up appointment and it is reflected in his notes. He bypassed the physical exam due to my mental stability. I cried about my worsening symptoms. I told him my concerns that the Ocrevus was not working. He told me in a certain subset of the population that the medicine can take longer to work. He assured me if we did an MRI that there would be no new lesions. He told me to give it more time.

The following are notes from my visit with him on March 30, 2022.

Progress Notes

Jagannadha R Avasarala at 3/30/2022 2:00 PM

Chief Complaint:

Shanna has a dx of MS. She works in radiology and is on OCR. Her LFT and CBC w diif are N done 5 mo ago. She was tearful. She has a R foot drop.

I received another infusion on May 20, 2022.

My MS symptoms continued to worsen. By the end of August, I was in a relapse. Up to this point, I had only been experiencing a worsening of old symptoms. This was the first time since the onset of my disease that I was having new to me symptoms. My left foot was numb. I was completely unbalanced with every step I took. The further I pushed myself to walk, the faster the world spun around me. Any feeling that came into my foot came in the form of pins and needles.

I came out of the relapse with lingering issues. My overall fatigue has worsened. I have trouble walking starting with the first steps I take in the morning. My foot drop has worsened to the point of dragging my toes around the house with every step I take without an AFO. My hip flexors barely function and my knee constantly gives out. I can no longer grip a pen to write or a razor to shave. I am learning to use my left hand to feed myself.

This is when I decided to do research. I wanted to know if others on Ocrevus had experienced similar flare-ups. There are plenty of clinical trials and research articles available to read, but when it came to finding actual patient reviews that proved difficult. Other than a few blogs and vlogs, the only actual patient review page I was able to find was Drugs.com where Ocrevus received a rating of 4.4 out of 10. My jaw dropped. I could hear my own personal experience in what people were saying. It seemed all wrong. I was initially told about people being pushed into their first infusion in a wheelchair and then miraculously walking into their next appointment. These people, and I, were experiencing the opposite effect. So many of us strolled into our first infusion and were now struggling to walk. I decided I was done with Ocrevus.

I was anxious as I sat in the exam room waiting for my neurologist. I did not expect this to be an easy conversation. I had not heard anyone sing the praises of Ocrevus louder than him.

He entered the room and without hesitation starts telling me about Ocrevus-induced colitis. Immune-mediated colitis, which can present as a severe and acute-onset form of colitis, has been reported in patients receiving OCREVUS in the postmarketing setting. Some cases of colitis were serious, requiring hospitalization, with a few patients requiring surgical intervention. He wanted me off the medication, too. He proceeded to do a physical exam and was astounded at how much my symptoms had progressed. He did not understand how I was walking without a cane. He also, for the first time, rated me on the disability scale.

The following are notes from my visit with him on October 5, 2022.

Shanna is 44 y.o. year old with presents for MS.

Her symptoms are worsening. R LE weakness is more pronounced.

R grip strength is poor.

Last MRI was done about 18 mo ago.

She has Uhthoff’s phenomenon.

Motor:

RUE: pronator drift

LUE: 5/5

RLE: foot drop, hip flexors are barely 3/5

LLE: 5/5

Reflexes: hyperreflexic throughout; plantars downgoing b/l

Gait/Station: CIRCUMDUCTION gait

Assessment/Plan: RRMS, with an EDSS of around 5.5

Will switch to Kesimpta

F/U x 6 months.

We are calling it a treatment fail. I am scheduled for an MRI in a couple of weeks to see what, if any, new damage there is to my brain and cervical spine.

I do not know if Ocrevus made my condition worse. It could be that I would be much worse off without it. There is no way to really know for sure. I do know, based on how I feel and my neurologist’s progress notes, that my symptoms have worsened dramatically since I started getting infusions. I went for a ten-mile hike the day before my first dose of Ocrevus and I have not been able to walk that far since. That speaks volumes to me.

For all of the bad reviews, there are still plenty of people who sing the praises of Ocrevus and hail it as a miracle. I am happy for these people and hope it continues to be the answer for them. What didn’t work for me, may just be the thing you need. I am only speaking from my own personal experience and treatment should always be something discussed with your doctor.

Please share your Ocrevus experience. Good or bad, I would love to hear how your treatment is going.