Columns Engaging Thoughts – a Column by Laura Kolaczkowski An Ocrevus Update Has Me Cautiously Optimistic An Ocrevus Update Has Me Cautiously Optimistic by Laura Kolaczkowski | April 12, 2018 Share this article: Share article via email Copy article link After a delay in treatment in late December thanks to a nasty head cold, and the after-effects of contracting the flu in February necessitating another delay, I finally received my second six-month dose of Ocrevus (ocrelizumab) in mid-March. Much like the first time, the infusion was uneventful. I had no problems with flushing, itching, elevated temperature, or any of the other potential side effects during the infusion. I know other people have a wide range of problems, so I feel fortunate that I am among those who experience nothing unusual. Infusion time Once again, the worst problem I had was being stuck in the infusion suite for six hours while thinking of all the other places I wish I could be. The first round of Ocrevus requires two separate infusions, separated by two weeks’ time. These initial induction rounds are only four hours instead of the six hours needed for the full dose I’ll receive in the next round of Ocrevus. Boredom was my No. 1 complaint then as well. Everyone wants to know: Do I feel different, or have I noticed any benefits? Honestly, again, I have to say I know I am no worse, and it takes time to turn around the course of multiple sclerosis. I don’t expect it to magically happen overnight, but there are signs that perhaps something different is going on. Changes I saw my neurologist the following week, and we were able to review my tests and the results from my annual MRI, done in late 2017. Thanks to an analysis by NeuroQuant software, I knew some things changed. The doctor also pointed out that the report showed a couple of changes for the good, which may or may not be from Ocrevus. The atrophy of my brain, due to both MS and aging, may be slowing or even improved. The NeuroQuant analysis compared my MRIs, which were done one year apart, and found these changes: NeuroQuant Whole Brain: Normative percentile 33. This was previously 26. NeuroQuant Thalamus: Normative percentile 70. This was previously 48. The increase in the thalamus is especially of interest to the doctor and me because this is an important piece of the brain that helps process signals to the rest of the brain. These signals include critical functions such as sleep and consciousness. My neurologist views this increased thalamus size with cautious optimism, knowing it is too soon to be sure of its implications. We will continue to watch for improvement via my next MRI. Other improvements Interestingly, I also performed better on the nine-hole peg test and the symbol digit modalities test compared to last year’s results. These are standard tests given at each of my neurology visits. In “real life,” I will never need to put pegs in holes, but the ability of my brain to control my hands to do a small motor skill like this is something I use all the time. I also will never need to match symbols and numbers under the pressure of a timed test, but it is a good indicator of cognitive processing speed. I’m cautiously happy with both of these improvements. It’s encouraging to think there may be improvements in my MS rather than a continuation of the downhill slide I have experienced over the years. I may not be walking faster, but Ocrevus may be quietly working on other functions like thinking and the ability to use my hands, which I value even more. While these improvements remain anecdotal, I hope to find continued improvement the next time I engage with my neurologist. *** Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis. Print This Page About the Author Laura Kolaczkowski Laura Kolaczkowski comes from Beavercreek, Ohio, and worked at the University of Dayton for over 25 years until MS challenged her enough to go onto full-time disability. She is active in the MS community on multiple levels, and writes for her own personal blog, InsideMyStory and as a patient expert for MultipleSclerosis.net. Laura is the Lead Patient Representative and co-principal investigator for iConquerMS™, a patient powered MS research network. Laura freely admits her Liberal Arts background fuels her interest in patient engagement and empowerment and she struggles with the science of MS. Tags MRI, ocrelizumab, Ocrevus Comments Phil Longford Hi Laura Is your MS relapsing remitting, or primary progressive? Sounds encouraging though. Seeing my consultant next month. Hopefully he will agree to the treatment! All the best Phil Reply Laura Ward It is SP Phil Reply Ron Humm Reply Rita Anderson Thank you for the encouragement! I'm heading to my first Ocrevus treatment... Reply Karen Bookless Good luck Rita, I am due my second dose in July and, touch wood, have had no problems so far. I am being positive and am hopeful this will halt my progression, onward & upward... Reply Lydia I am curious, are you diagnosed as RRMS, SPMS, or PPMS? Also, pardon my asking... your age. I am contemplating my next move, but at 54 and non active MRI’s wonder if it will benefit me. Risk versus benefit issue. Reply Ken I'm really happy to read how you're doing and the small gains you've been seeing. I start Ocrevus in a few weeks and have my share of anxiety. There are so many negative people on line complaining about the whole process. They're miserable during and after the first infusions and swear the Ocrevus did nothing for them. I am a lot more positive about how I'm going to do and your story has made it a little easier to do so Reply Ann My husband 54, has benefited from Ocreves, plus he was walking bad and for the 3rd time tried Ampyra, the walking drug... 3 is a charm He has RRMS Reply Ann I've been with my husband as the constant Advocate. He's been fighting this horrible disease since 2007... we think he started it in 2001, with vision problems. He had been a 6'2" good looking contractor when I meet him. Strong as 2 men, avid reader, muy intelligente. Praying & waiting for a cure.Meanwhile positive attitude imperitive... I helped immediate family thru 2 COPD, 2 Cancer, my diabetic type II now. Hang in there! Ocrvevus is his 5th medicine, it and Ampyra, have helped greatly... naps, R&R Reply Elizabeth Whyte Good luck Ken. If people are having a decline due to Ocrevus, we have every right Perhaps further down the track I may see some positives but so far I have lost my job due to the cognitive decline after 16 years on Tysabri. Apparently, my disease is progressing now due to the lymphocytes being able to cross into the brain where previously they couldn't. Reply Alicia Thank you for your article. I too am on Ocrevus for PPMS, however, I have not met the one year mark yet. The one year Ocrevus anniversary will arrive this June. I too am cautiously optimistic. I have not declined in symptoms for the first time in several years. My gait has not gotten "faster", but it has not declined either. Yes, the infusions are long and boring, but I am grateful the whole infusion time that there is a treatment for PPMS. I would sit in that infusion chair for a week if I had to! Reply GARY SHAMBLEN Does anyone know of any studies that are or will be done with Ocrevus for SPMS? Reply Stephanie Bowen If you have been on Lemtrada, can you have Ocrevus? I am a little better from 2 rounds of Lemtrada for gait and balance, but nothing in shaking and coordination or cognition. Reply Dr. Ammarah Malik Hiya, Just read your query, while browsing net about Ocrevus. I’m 38 years old female, have severe RRMS. Being on Ocrevus myself, had first two infusions. Some skin infections, but nothing at all major. Previously, Tysabri failed after 2 years, Lemtrada failed similarly. Neuros in London, gave me two options: 1. Stem cells 2. Ocrevus I chose the second, as atleast it’s been recently approved on NHS. Hope that helps. Best wishes Reply Lisa McKenzie I am so happy to hear you’ve experienced measurable improvements. I hope you continue to see progress. Thanks for sharing a success story! Reply Joshua Kalnitsky I will be seeing my MS doctor early May. I hope to try any thing to get some relive from this horrible felling. Reply Karen Bookless Hi Laura, thanks for sharing your story. Reply Al I have PPMS and had 2 rounds of Ocrevus infusions. Both times I have had more progression right after the drug. Walking, balance, tremors, spasticity, infections, etc. became worse for months until the drug started wearing off and B cells were growing again. The benefit of possibly slowing PPMS progression up to a max of 24% is not worth the risks associated with the drug. It may help some, but until a treatment that restores myelin is available (and there are several studies in the works now) we won't heal or potentially repair our nerves. Hope is great to have, but before believing this is a cure or reversal will start, do some research. It's not easy to do being bombarded with ads and stories of the "game changing" drug, but is well worth the time. If it helps you, wonderful, but for those that are questioning benefit versus risk, it's worth asking. Reply Carolyn Kelley Very helpful to read different peoples experience. I’ve been diagnosed since 2014 and have seen a marked decline in the last 6 months on Copaxone. We decided to make the change to Ocrevus, but I am waiting to find a facility that is in network for my insurance . A bit frustrating to say the least. I concur with Al to some degree and am hoping for myelin restoration breakthroughs as the next treatment. There’s got to be something more permanent and, preferably, natural. Until then, each day is a new reason to remain faithful. Reply Patricia Story I am 66 and have had MS since 1986. I started Ocrevus this year. After reading all the comments, Yes,, maybe there is an improvement. I am also going to a physical therapist and I do seem to be walking better. Not much improvement with my balance however. If that would improve I could give up my walker and just use a cane. I am experiencing one side effect that wasn't mentioned and that is dry mouth. Has anyone else noticed this worse than before? Reply John Have a friend that is on Copaxone and had one episode of optical neuritis. He was told to forget about Copaxone and start on Ocrevus immediately. He is only 30 years old and I would rather he stay on Copaxone. What should I tell him? Reply Teresa Lawson Hello John, This is my first time to see/ read/comment at this site. I was compelled to mention my excellent experience with Tysabri. If your friend tests negative for the JC Virus he might consider Tysabri. I was infused once a month with Tysabri for 10 years. Being on that drug for a decade is rather unusual but I am SO very grateful for those 10 years. I feel that I improved ( better balance, walking, clearer thinking) and stayed VERY stable while using that treatment. Prior to Tysabri I was using the injectable Beta Seron for 7 years and began to decline. My neuro and I agreed to switch meds and I am so glad I did. I would recommend you and your friend do some reading about Tysabri before going to "the big guns" with Ocrevus. (Unless his doctors feel he is possibly PPMS, Primary Progressive MS). Ocrevus is being prescribed for folks who seem to be declining rapidly or for folks who have failed other MS treatments. I wish your friend well and he is fortunate to have you on this team! Reply Jeanine Hi John, I was on Copaxone for 12 years. Ocrevus has a better efficacy rate - your friend deserves the best. And having taken a daily needle for TWELVE year is bothersome , it is refrigerated medicine so you must keep it cool when traveling and should carry a. letter from your MD justifying the many syringes in your carry on to TSA agents. My insurance wouldn’t approve Ocrevus until I had 2 failed MS drugs- in that case he should consider on of the new MS pills like Gylenia or Aubagio Reply Lexi Wilson Interesting reading the comments of people who have tried Ocrevis. I have SPMS and am thinking of trying Ocrevis though have questions about side effects of the drug. I've heard different things about the drug that sounds scary plus I have to wait for Kaiser to approve it's use. Thanks for your comments about Ocrevus. Spell check didn't change it this time. Bye now Reply Susan Hi Lexi. I have Kaiser too. I looked into their formulary of drugs and I saw Ocrevus in there. I'm still on Copaxone but still considering a change to Ocrevus. I wonder why someone at Kaiser says they don't use it. Reply StarGzr That news is certainly encouraging! Thanks for sharing. Your post is the first that I have come across that mentions NeuroQuant analysis. I had this analysis performed on my MRI last year, and received very disturbing results regarding my hippocampal and ventricular volumes. I am curious if these particular measurements were performed as part of your analysis? Reply ROnith I just recently switch from Gilenya where I had no new lesions for 7 years while on drug Felt fantastic I have a very busy life as a single mom of two girls and not much My white blood cells drop so my neuro decided I needed to switch to ocevis I have had completed my first round and have not been doing well. Not sure what is happening but I am having terrible drop foot/walking problems and just all around not feeling good ... I had an MRI and blood work taken last week so hopeful to get some answers Reply K Hi, first time on site, I too am on Ocrevus, and finished the first 2 half doses. I am not feeling well either. My fatigue is awful at this time. I will be seeing my doctor next week and ask for blood tests to be run. Very concerned Reply Fabi are u feeling any better? Reply Merblair The thing that everyone seems to forget is that this disease is like a chameleon, which is the reason we don’t have a cure yet. I am a very happy with any dmts that have been offered. I would do stem cells if I was younger. It might give me a few years without MS. Reply Shirley Hi my friend Laura! I was not impressed with Lemtrada and feel it has made me feel ten years older than I am. I’m about two years post infusion. I think I will discuss this with Doc next month. The first dose separated by two weeks will be my only hard part. I am 8 hrs from my neuro. I am 76 and just got out of neuro icu for subdural bleeds from 2 falls. Reply Steve Stine I was diagnosed with PPMS in December 2017 started the first Ocrevus right away also on amprya have many symptoms to numerous to list my walking has gotten better but every time I walk more than forty yards about as far as I can walk at one time it takes days to recover now it is getting warmer I feel like I am starting to go backwards or else the effects of the meds are wearing off Reply Haslie Kemp I am not waiting for a cure. I have today and I am going to live life to the fullest one day at a time. Each day is a challenge and I meet it head on. You see, I have nothing to lose. I was diagnosed in 2010 with SPMS with no treatment after being in a wheel chair for 5 years and symptoms for over 30 and I am not 78yrs old so I also have other medical problems but life goes on. Reply Angie Anderson I tried Copaxone and had a horrible experience. Now they want me on Lemtrada. But I really want Ocrevus but they told me it causes cancer. I am not sure on that can someone tell me about that. Reply Jeanine I talked to my Neuro at University of Penn MS clinic. I also talked to the Pharmacist who is part of the MS clinic. They told that when Ocrevus was an. clinical trials there was the cancer concern, however seeing it in a larger group of users now that it’s s being used by many other t appears that people who developed cancer were people who had family histories of cancer and were likely to develop cancer anyway. Reply Kathy Thank you Laura . I had my first treatment last month mid May. I follow it with my neurologist June 26. I have RRMS And previous to Ocrevus have only taken Copaxone since 2004. I had no side effects to the actual infusion but since receiving the treatment my walking is worse with severe back pain and I am going to have to use a walker . Reply Kimberly Hi, first time on site, I too am on Ocrevus, and finished the first 2 half doses. I am not feeling well either. My fatigue is awful at this time. I will be seeing my doctor next week and ask for blood tests to be run. Very concerned Reply Karl I Started having symptoms Jan/FEB 2017 -- loss of red saturation in one eye. This progressed to significant all-over pain and weakness. Formally diagnosed in April 2018 large 2 cm ovoid t2 lesion, multiple paraventricular white matter lesions and the epididymal dot-dash-dot multiple gadolinium enhanced spots - Ocrevus 2 initial half-dose infusions May 2018 Had an MRI in September - ovoid lesion gone, less dot-dash-dot, less paraventricular lesions -- no dawson's fingers at all I still have episodes, but nothing like having to lift my own legs out of the car with my arms. Ocrevus is a wonder drug. Reply MaryAnn Yarborough I have had the first two 300mg (half dose ) of Ocrevus so far. I had no reaction but I have been feeling much more fatigue than before. I am looking forward to my first full dose in March 2020. My MD went through all my MRIs with me first so I am interested in seeing MRI results for myself, and published results for other pts in one year in one year. I am a 68 yr old retired RN who did research for many years so I am interested in the results and hope I am a responder. Reply Leave a comment Fill in the required fields to post. Your email address will not be published. Your Name Your Email Your Comment Post Comment
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