When I was diagnosed with multiple sclerosis I was overwhelmed, physically and mentally. I was also the most scared I have ever been in my life. I dove head first into research about my new condition. There were so many people who were battling MS with special diets and exercise. This intrigued me the most. I have been into physical fitness and eating healthy in some form for most of my adult life. I was an avid hiker and cyclist at the time of my diagnosis. I enjoyed running. My diet was better than most people’s. I was a vegetarian and had been for nearly a decade. I monitored my intake of processed foods but admittedly had a sweet tooth. Given the state of my health at the time I became symptomatic, I felt confident that diet and exercise were not my answer. I was already doing those things right.

Something I consistently came across in my research was the statistics on how quickly untreated people with MS progress to the next stage of the disease. I started researching medications. It was too much. You could get an infusion every week, every month, or twice a year. There were injections to be given daily, three times a week, or monthly. The pill options were too numerous to count. The side effects even more so. I did not know what to do. I placed the decision entirely on my neurologist. He had already decided before he even met me. All of his newly diagnosed patients were going on Ocrevus and most of his established patients were making the switch.

I did not read too much about treatment options after the decision was made to start infusions. My neurologist was confident this was the right choice and he has more years of experience with MS than I do. Ocrevus still would have been my choice had I done more research. It was new and promising. I was desperate. Given the newness of the medication, there were no patient reviews from anyone who had been on it long-term anyway.

After I read the reviews on Drugs.com and made the decision to stop Ocrevus, I really dove into reading what others who had the same negative experience as me had to say. I wanted to know if they continued to decline or stayed the same after stopping the infusions. I wanted to know if anyone started to feel better and if their mobility returned. I wanted to know if this was going to be the new me or if there was hope I would recover some of what I had lost. What I was discovering, that was not available before, were reviews from people who had now been on Ocrevus for years. Many of them, like me, had worsening symptoms and were unhappy with the results.

FD32·Taken for 1 to 2 years·June 3, 2021

For Multiple Sclerosis “When Ocrevus first came out it was practically touted as a ‘miracle drug’ and it seemed like everyone with MS wanted to get on it. I had such high hopes when I read that not only did it do a great job in reducing relapses and new brain lesions, it significantly slowed progression and even dramatically improved a lot of patients’ symptoms. Well, in the almost two years I’ve been on it all it has done for me is make my walking a heck of a lot worse. Prior to Ocrevus I used to enjoy going on hiking trails even though I use a cane. Now I can barely hobble around my backyard. Rather than slow down progression, it seems to have sped mine up. I fear that if I continue to stay on it, the day will come when I won’t be able to walk at all anymore. Really disappointed and disgusted by this drug.”

Some of the patient comments gave me hope that I would get back to where I was before the infusions.

Anonymous·July 26, 2021

For Multiple Sclerosis “My boyfriend was diagnosed in 2002, was on Rebif for a few yrs until he was switched from RRMS to SPMS and back then nothing else for him, when Ocrevus came out everyone raved about it. Thom had been without meds for 10 yrs so he was pretty anxious to start, especially with all the positive reviews. The first halves he started to experience more leg pain, after his 1st full dose he became so weak he was bedridden, could not roll over in bed, could not hold himself up in a chair, I would strap him in, all of his symptoms went into overdrive. His doctor and everyone from Ocrevus groups said give it time, he was on this poison for 2.5 yrs, along with all of his symptoms worse and the weakness he had hair loss, extremely dry flaky skin, skin lesions, bacteria infection in his nose, extreme constipation. It’s been 19 months since his last infusion and thank God he is 95% back to his baseline.. All these doctors are calling it progression but in actuality it’s this poison.”

In the process of looking for answers, I have also come across some other helpful sites. A quick Google search will reveal dozens of forums where you can ask questions and interact with other people with MS. Two that I highly recommend are Shift MS and Stuff That Works. Shift is a very user-friendly, easy-to-navigate site with a wealth of information. To register for Stuff That Works you will need to fill out a somewhat lengthy survey to get the most benefit. They will ask questions regarding your diagnosis, height, race, etc. When another user of a similar demographic with the same diagnosis as you makes a post regarding a treatment they have tried, you will get a notification.

My last infusion of Ocrevus was on May 20, 2022. From prior experience, I should be entering the crap gap. I may already be there. It is hard to tell with the way my symptoms have been gradually worsening. My hope is that once I reach six months out from my last infusion, I can start the countdown to Ocrevus leaving my system for good. I have read about and heard from so many people who think the infusions also did them more harm than good. A lot of these people have also said, though it did take quite some time, they did start to eventually feel better and gain some of their mobility back.

When it comes to my MS, there have been very few things I have been excited about. Quitting Ocrevus is exciting. I have no doubt I am making the correct decision. For the first time in two years, I have something to look forward to when it comes to having this disease.