Ocrevus update: still early, but cautiously optimistic.
Relevant history: officially diagnosed with PPMS in April of this year, although there is some uncertainty in my case. I have approximately 40 (!) white matter lesions in my brain and 1 in my spinal cord at C7. My MS had a very aggressive onset, and occurred in the same timeframe as at least 2 other autoimmune conditions, and as such it is sometimes difficult to determine which condition is responsible for which symptoms. Ocrevus is my first MS drug, and is expected to help my other autoimmune diseases as well. My first half-dose infusion was on 6/22 and the second was on 7/6, so it has been about 4 1/2 months since I started.
While I have had some intermittent encouraging signs and better days over the past couple of months, for the most part they haven't been sustained so far - lots of day to day variability, in other words. There have also been a fair number of short-lived but rough setbacks mixed in. However, this past weekend I had the two best days I've had in the two past years. Something was clearly different; I was walking easily around the house without the walker, pain was minimal, I felt energized and motivated, and just started seeing things that needed doing everywhere - and doing them! I felt almost "normal" for awhile, and pretty productive for a change. Much of the last 2+ years have been spent on the couch or in bed with legs that were unreliable on a good day and useless on the worst days. Fatigue has often been incapacitating, and that symptom actually has shown fairly steady improvement for a couple of months, which is pretty huge. I don't know if my weekend visit to a glimpse of my former self will turn out to be fleeting, or if it's a sign of things to come. I hope and pray it's the latter, but am determined to continue to be patient, recognizing that it's still very early to evaluate effect for a B-cell depletion therapy. I'm sure there will be many more ups and downs along the way, but at the moment I am optimistic and wanted to share so others who are also early in the process can feel hopeful and encouraged too.
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dianekjs
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Hooray for optimism 🎉 Ty for the history review also in this awesome update. I hope the O (is anyone else calling it that yet?!) is able to calm your immune system down.
Wow, that's crazy good! I am sooooo stoked for you. Thank you for sharing 😘
I know that's right! The other shoe is ever looming with MS. It takes effort to stay positive and your optimism is inspiring.
I'm loving it! I feel like I'm just winging it every day and assume that's normal. We are both sleeping more now at night. I'm taking newborn videos almost weekly, and I looked back on some yesterday and am so glad I did! Thank you for asking! 😘
dianekjs i pray it continues. Thank you for sharing a true account of Ocrevus. It is still not available herein the uk, so I am collecting lots of info from you guys n the States. Blessings Jimeka 🦋 🌈 🤗
Thank you so very much jimeka , I'm very encouraged. I hope that it will be available in the UK soon so that it is at least an option for you and others.
@jimenka What is the hold up in the UK? Usually the EMA doesn’t lag too far behind if US and EU filings are done simultaneously. Dont know the filing dates though. Do you?
Nom_De_Plume it has to be approved by the European body first, then the Nhs look to see how cost effective it is. They are looking at next year sometime.
10-Nov-2017: The European Medicines Agency (EMA)'s *CHMP* has recommended granting a marketing authorisation in the European Union (EU) for Ocrevus (ocrelizumab) for the treatment of adult patients with relapsing multiple sclerosis (RMS) and early primary progressive multiple sclerosis (PPMS).
Nom_De_Plume thank you, I had not heard, but I think it also depends on the funds available. I would not qualify, rightly so they put the younger ones first and the newly diagnosed. Blessings Jimeka 🦋 🌈
@diamekjs I really hope this weekend is a glimpse into a regular trend that’s upcoming. I’m super excited for you but understand you have to be cautious about that. Please continue to keep us posted. Love that the O is treating more than one condition. I’ve experienced that too with other MS meds. We’ve gotta catch a break somewhere, right?!
I’m getting blood work done tomorrow which will determine if I can go on O. Hoping I can!
Dianekjs...great to see your update & optimism! I began Ocrevus a week after you (6/28) & have similar thoughts on reactions. History: diagnosed PPMS 20 years ago, I tried several DMD’s at first but have not been on any for 12 years until Ocrevus (4.5 months now). I use a walker in my home, a forearm crutch for short walking & a scooter (Travelscoot) for long distance. Subjectively, I am feeling like my steps are a better quality & my stamina a bit better. However, objectively...I began sweating! Haven’t done that in MANY YEARS. I too, am also trying not to get overly excited about the results but even my husband has noticed.
Scheduled to receive my second round of Ocrevus on 12/28!
My Travelscoot has been my companion for 10+ years now & I get a lot of interest from people. Looking at replacing the battery again & I saw their new version with a reverse! (For others travelscoot.com) My attached picture is from a museum display in Montreal, Canada.
Actually...the lack of sweating is thermoregulation that some people with MS develop, increasing the dangers of overheating and the complications that follow. My sweating disappeared slowly over many years & its return was a surprise as I was gardening. It is an identifiable, not subjective result of Ocrevus. Another’s perspective:
dianekjs thank you so much for your update. I also have PPMS and started O. in later August. I have not had any positive changes to report yet, but am still hopeful. I had been wondering how other PPMSers were doing. This is one of the reasons I enjoy this site so much.
I had my first Ocrevus 6/6 second 6/20. I was diagnosed with RRMS almost five years ago by a reg neurologist. I switched to MS neurologist and she diagnosed PPMS. I too have been solely on a walker or scooter all year. I too feel the quality of my walking is improving to the ointment I am going to try just cane for very short distances. I also started to sweat which I have not done easily for yeats and I live in Southern California. Second dose is 12/1.
RobertCalifornia , you are 20 days ahead of me. That’s wonderful you are seeing signs of improvement! May it be just the beginning. Keep me posted. 😊👍🏻
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Update to: Neuro apptmnt & Ocrevus
