Any members of our extended family that are on the therapy, Ocrevus, I wanted to conduct a small on official Pole about how the therapy was going for everyone. Some basic questions I would like everyone to answer is;
1. How long you have been on Ocrevus.
2. If you have received any negative reactions to the therapy or the infusion process.
3. Or if your infusion and therapy administration has gone smoothly with no issues.
4. It's you are noticing any positive results from the therapy, please share them with the group.
5. And vice versa if you have any negative results we also want to hear about them.
6. Anything else you think is pertinent to this poll, and to the effectiveness of Ocrevus. having any issues in dealing with Ocrevus, especially non effectiveness.
Once again, by sharing our individual information about our experiences with Ocrevus, we will learn much from each other. I'll begin break the ice about my experience with ocrevus
Written by
Fancy1959
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As I stated above I'll be the first reply to get the ball rolling on this poll. I started Ocrevus in September of 2017. When I had my first infusion I had no negative reactions to the Ocrevus at all. The only thing I had a negative reaction to was the Benadryl they make me take as it made me fall asleep in my lunch plate! I'm serious I literally landed my head in my food. Haha! They didn't like that much at all!
It took about four and a half hours to complete my first visit to the hospital with my first infusion. After that first-half infusion I immediately noticed a complete reduction in my spasticity. It simply went away and I was amazed.
However, don't hold your breath, it slowly came back but not as bad as I got close to my second half infusion 2 weeks later. The second half dose went just as smoothly as the first half dose. Once again I noticed an almost complete reduction in my spasticity. Then I started to notice my walking seem to be a bit stronger too. As after the first dose, the spasticity did come back slowly.. I don't believe that has ever gotten back to the level it was prior to my the first dose with Ocrevus.
As far as noticing any major improvements or stability in my progression of disability I can't accurately judge that as I had major surgery in November of 2017. I think if I said I noticed no improvement at all I would not take into account to trauma my body endured during and after surgery. For me, just feeling like I stayed kind of the same is a major accomplishments since I had the surgery.
I go back next Tuesday for my yearly MRI to see if I have any active or have developed any new lesions in my head, thorax, or spine area. I will definitely know more after that MRI and I will follow up and let the poll know about the results.
I look forward to talking to others who have tried Ocrevus. It doesn't matter if you got off of it quickly because you couldn't take the infusion or the side effects or if you are on your second and third dose, we need to hear from everyone to help make this poll successful. It is my hope that in talking about Ocrevus and letting everyone know how it is going with those of us who have officially been on the therapy it will provide much-needed information to the many new people who are looking at the therapy. It is often difficult to find someone with first hand knowledge to talk to about it. The doctors are very knowledgeable in their understanding of how the drug works but they have not had first-hand experience of taking it themselves. And that is what makes our input so important to those considering the therapy.
Please reply if you have had any experience taking Ocrevus. I know I personally cannot wait for April to come so I can get my second full dose of Ocrevus!
I’m relatively new to this site, hope it’s not too late to join in with Ocrevus issues..
I will be having my third infusion 4/16. I can’t say I’ve seen any marked improvement overall, but my neuro said he’s not seen any changes in his Ocrevus patients til they’ve had at least 3, maybe 4 infusions, so I’m hoping...
On the flip side, I’ve noticed a lot of hair loss. I had it with gylenia and thought it would stop, but unfortunately it hasn’t. Hard to pinpoint negative side effects that I can attribute to just Ocrevus. Fatigue has always been an issue and as I’ve progressed from RR to SP, the weakness, numbness, gait issues (from walking 3 miles a day to furniture surfing and using a cane outside the house) has become daily doses of MS reality. I can’t say any of the worsening MS symptoms are directly related to Ocrevus. With all the DMTs I’ve been on over the past 30 years, I’ve always known that although a certain therapy may not be “helping”, how do we know that without it, how much worse I’d have been. No one knows that answer.
So we keep the faith, stay with PT and exercise - that will always be beneficial, no matter how little or how much we can do - and be our own advocates.
All7 First, welcome to this forum. I have been on this forum for 1 year this month, so I do not consider myself 'new'. I just had my third Ocrevus infusion in February so we are pretty much on the same schedule. Before that Tecfidera, and before that Copaxone. I agree with you, how do we know if any DMT is doing good for us? MRIs can only 'see' so much. You have noticed that you are experiencing hair loss? I have not but some members on this forum have posted about this issue. You can search for those posts. Also, communication is key so let your medical team know about this. You also work with a PT? That is fantastic. You keep the faith, and being your own advocate is the best thing that you can do. I will keep you in my thoughts for your upcoming Ocrevus infusion on 04/16. Let us know how it went if you can, okay?
2, one issue I had with the second dose I had tried to get up to walk and my legs gave out good thing I was near my rollater.through out the night I didn't have full strength, But my legs were ok by the next morning.
3. I didn’t have any problems when they were giving me Ocrevus.
4, I have not noticed anything positive in having Ocrevus.
5. I have noticed that by 4-5p.m. At night I become very tried and weak I feel lethargic. So I have to plan anything I want to do around my body.
6, I do feel that so far nothing good has happened with taking this medicine but we will see with by next dose that will be in April.That will be my first full dose.
Ssdw1958, it looks like you and I are on almost the exact same schedule. I'm not planning on giving up anytime soon. They say the best results start to happen after your 3rd or 4th infusion. We need to stay in touch and compare notes about any good outcomes we see from our infusions. I will try to update this post sometime in the early summer. I plan to update it about twice a year so we can compare notes with everyone else. Thanks for participating. I wish you the best of luck with your therapy! Fancy.
Thanks Fancy1959, I wish we had other things in common. But I am hoping this works out. I just wish Mother Nature would make up her mind what she is going to do. My body needs her to figure it. If you know what I mine. 🌺🥀🌸🌷
Pihokken, you are very welcome. I plan to put updates out on this post twice a year to see and compare notes with others who are also on the ocrevus therapy. Please keep me informed as to what therapy you choose. And if you choose ocrevus join in the poll to compare results and issues you might have. Fancy
Hi Pihokken I'm on Rituxan since I came out of the hospital 2years ago from being paralyzed. So far so good! I found out I had MS on October 29, 2015 and I was paralyzed November 10, 2015, came out the hospitals January 12, 2016.
I had my first two half doses in January. Absolutely no problems with either infusion. 2 days of fatigue after each due to the anti- histamines.
Good- less heat intolerant
Bad- more trouble sleeping.
Spasticity which worsened after last exacerbation is no better.
Follow up visit with neuro- B cells are at 0, which is the goal. All rest of labs are normal. He said that the hope for me is that O keeps me from turning to SPMS. Any benefits unlikely to show up until the first 6 month infusion.
Lona, your therapy with ocrevus does sound promising for you. I plan to update this post twice a year so please keep in touch. I have heard over and over that the best results are seen after the third or fourth infusion with ocrevus. In April I will have my second full fusion only. I am anxiously awaiting it. If you do not have any magnesium in your diet ask your neurologist if you can add some. It helps a lot of people to sleep better. Be careful not to add too much too quickly. It is what the doctors use to clean you out before you have your colonoscopy. So you know what it can do without me going into any messy details! LOL!
Please keep in touch. This poll can only be successful if we all compare notes and results. I hope it will help those who are considering to start Ocrevus if it's right for them. Thanks. Fancy.
After my first two weeks apart infusions, like you, my B cells are at 0. However unlike you, my T cell count dropped drastically. My CD4s went down to 203 so I'm doing the anti-viral meds/vaccines like that is given with people with HIV+/aids to hopefully keep me from getting opportunistic inflections. I saw an infectious disease doc and he doesn't see any other causes so he suspects its the Ocrelizumab that cause my drastic blood count drop. Presently my second Ocrelizumab infusion is on hold. I have PPMS.
Anyone out there on Rituximab that has had a similar experience with CD4 count drop? Since Rituximab and Ocrelizumab methods of action are basically the same. I'm researching what's happened with Rituximab users because it's been in use for almost 20 years.
Cjuncker, it's Fancy1959. I do not recall speaking to you before so I want to make sure I welcome you to this awesome chat room. You have sounds a safe place where you can ask questions, voice concerns, or simply speak to others who truly understands that are the some of the most caring, compassionate, and kind people I have ever met.
I'm so glad you responded to my Ocrevus poll. You have unique results to share with the poll's respondees as both yours B & T cells dramatically dropped while on the therapy. I have never been on Rituximab, so I cannot talk to you about any information there. I am just getting ready to do my one year MRI to check for signs of disability progression. At the same time I will be pulling blood check my cell counts. I am scheduled for my second full dose of ocrevus in April.
Please keep in touch. We are all trying to gather and compare as much information as we can Ocrevus. I plan to update this post twice a year so we can compare results and hopefully our success with the therapy . Let us know as soon as they think it is safe for you to receive your next infusion. Until we speak again stay healthy and take care of yourself. I hope to hear from you soon. Please remember that together we are stronger! Fancy.
I'm not familiar with all of the different white cell counts, but while I was on gilenya, my lymphocytes dropped, but not before the 350 that my Dr was using as a cut of criteria. I read on the Mayo website that lymphocytes can be increased with green tea and protein. To no avail, I added whey protein powder on my smoothies. However, when I increased my red meat intake my lymphocytes went up to 800+. Just mentioning, in case this is something that may help you.
As part of my Ocrevus treatment my neuro ordered lab work every three months to monitor my lymphocyte levels (cd4, cd8 & cd19). It is normal that these level decrease (i.e., cd19 goes to 0, but my cd4s & cd8s decreased a lot....cd4=200). My cd 19s returned to normal after 1 1/2 years from my last Ocrevus infusion but my cd4s & cd8s are still significantly below normal. My neuro wants me to see my hematologist again since he believes my low T lymphocyte levels may be due to something else other than MS DMTs.
cjuncker This was my case too. Tcell (CD3, CD4 and CD8) were still low after 6 months - below 300. This is why the neuro postponed Ocrevus round 2. I had it 2 today / 12 months later.
As long as you Bcells are zero, you're protected and in some people like you and I, it can last for up to a year.
I've had trouble sleeping for at least a month after each Ocrevus infusion, then again 1 month prior. The oncologist that administers O to me said that he's seeing that many patients are only getting 4 good months between the infusions. Months one and six seem to be bad. This is my experience as well.
Lona, it's Fancy1959. I am having trouble getting the YouTube video to play. It might be the simple fact that my 2 year old notebook doesn't have the what it takes to play it. In other words it's old and outdated! Boy don't they get outdated quick! My next year's Christmas present is going to be requested as a new notebook from my family. If you have any thoughts on the matter please give me a shout. Thanks. The video looked extremely interesting but it wouldn't play. Fancy.
Duh.....me....! Thanks Lona! I tell you I worry myself sometimes! If I keep falling and getting concussions, ( I fell down and got my 7th one this past Tuesday), I won't have any marbles left! I'll google it shortly! Fancy!
I started Ocrevus in April of 2017. The infusions have gone smoothly, other than getting a headache. It did seem as if my fatigue, which is always a big problem for me, was worse for about 2 weeks, along with minor headaches and some nausea. I have also had some breast pain for a week or so after the infusions. my neuro thought that could be a reaction to the steroids. Like Fancy, I have noticed a lessening of my leg spasms for the first few months after the infusion. Other than that I haven’t noticed any improvements. My biggest problem with the infusions has been getting over viruses. I’m not sure if that is because of the Ocrevus or not. I am due for my 4th infusion next month. I still have high hopes that it will slow down the MS progression and help with my energy. Wishing the best for all of us.🙏
2nd dose to make full dose was done at end of January. Infusion went fine. After math was fatigued. I have had some neck pain that i had not experience the way i did this way round. Seem to have had more mobility issues. The positive is knowing I having taking care of my MS meds for 6 months. I did just have relapse. Hospitalized 2/28, released today. 3 days of steroids. Sent home with script to do the 21 pack of steroids.
Diva, it's Fancy1959. I truly hate to hear of anyone in our family having a relapse. Are you relapsing and remitting still? I myself am secondary Progressive. I am noticing a trend in the posts of increased fatigue after the infusion is done for several weeks. I guess I've been truly blessed because I have not noticed any additional fatigue. I'm also to the stage that I have to use Mobility AIDS to go anywhere. My balance is and has been torn to shreds for the last couple of years. It does seemed to be if it worse especially going backwards. That's what happens last Tuesday evening is that I lost my balance backwards and landed hard on my head on our hardwood and gave myself my 7th concussion. I have to be careful because I feel off balance to the back a lot.
I plan to update and repost this post twice a year so we can keep track of each other's results and hopefully improvements. I will continue to pray that our ocrevus therapy gives us the results we so crave. Please keep in touch. Fancy.
Yes I am. And I too have to use my rollator to get around. Fancy1959 be careful. I know it's hard when the balance is off to control them falls. I believe Ocrevus will come around in due time to give us all justice in some way eventually. At least i hope it does.
Regarding Ocrevis all I can report after having 2 doses August 2017 and February 2018 I experienced extreme fatigue for 7 days and 18 days respectively. Not noticing anything positive yet but am hopeful
Pink, it's Fancy1959. As I mentioned to Diva the extreme fatigue seems to be a Common Thread after the infusions with ocrevus are finished. I plan to repost this post twice a year so we can keep up with each other's results. It is my hope that we all receive the results we so pray for. Please keep in touch so we can keep comparing one another's accomplishments! Thanks for replying. Fancy.
Many thanks for you taking time to do this. Hope all is well with you
Thanks Fancy1959 for doing this! I transitioned to SPMS after 20 years of RR, and have tried so many different treatments over the years, but had to stop each one due to terrible side effects. Each time I ended up feeling much worse than if I took nothing, so that’s what I’ve been doing - nothing! Now I’m secondary progressive, and had to start using a rollator due to spasticity and balance - too many falls! I was watching the 700 Club last week and a woman with MS was having great results with Ocrevus, so I just started to look into it. Your post is exactly what I needed to help make my decision. I’m tired of watching my quality of life slip away slowly and I want to do something to hopefully stop it, or slow it down. I’ve been really afraid to try yet another medication, but you are giving me the courage to ask my neuro about it. Thanks!
Taosgirl, it's Fancy1959. You are very welcome. I plan to update this post twice a year. So please keep in touch and let me know what your decision is after speaking to your neurologist. I am also in the SP stage of MS. I was in the exact same position you are. I kept watching my disability increase right before my eyes and my quality of life decrease like I sliding down a slippery slope unable to stop the slide!
I was in a position where it was time to try just about anything to stop the increase in my disability or my quality of life would be nill since I was always such an active person prior to MS. My neurologist could not stop bragging about Ocrevus. He was actually a spirited in the clinical trials that took place on the drug. So he has first-hand knowledge of what possibilities the drug could open up. When I questions about other drugs and therapies, he told me I was right where I belonged. He said that I needed to stay on Ocrevus long-term because there was nothing else on the market that showed the potential for Progressive patients or drastic disability stoppage and Improvement. So I am staying put. I'm getting ready to do my second full dose in April. I can't wait to get to my third and fourth doses because that is when I understand improvements can starts to manifest themselves clearer.
Keep in touch please and let us know your decision. Together we are stronger! Fancy.
All three of my infusions have gone off without a hitch. I was given my infusions by the first doctor to do an infusion in the state of California. I do believe she was very involved in the clinical trials of Ocrevus because she started talking to me about it more than two years ago. My diagnosis is PPMS
I have noticed some slight improvements in some of the areas that MS affects me. What I hope for is a slowdown of the progression. My neurologist said to give Ocrevus two full years before making a decision about it
Thank you so much for taking the time to reply Robert. It means so much to get everyone involved that is taking Ocrevus. You respond to the new therapy sounds very much like my own. I have not had anything negative happen from it either. My doctor that started me on ocrevus was also involved in the clinical trial and was a major force in the development of the drug being approved. I go for my second full dose in April. My neurologist also said to give this therapy at least three to four or more infusions because it took that long usually to show positive benefits from it. But he was also extremely excited about the possibilities that Ocrevus showed in clinical trials.
I plan to update this post twice a year so we stay in touch with one another and compare results. So please keep in touch. We will learn much from each other's results when dealing with this new therapy. We can't learn if we don't participate. Please take care until I post again this fall. And remember that together we are stronger. Fancy.
I love reading everyone’s responses to Ocrevus. I’ve tried to search for Ocrevus patient reviews but none seem to exist. Thank you Fancy for setting this up!
I had my first full dose two weeks ago. I joke with my doctor that I love the Benadryl additive they give you thru your IV. This knocks me out so I sleep during my infusion time lol. So far I’ve had no side effects.
Following my infusion, I experienced more energy and less spasticity. I also experienced this after my first infusion but as time went on the spasticity slowly came back.
My MRI results showed no new lesions following my first infusion so that’s a big plus! I’m looking forward to my 3rd and 4th infusions Ocrevus has given me hope again.
Thalcomb, it's Fancy1959. I am glad the post helped you read info posted by others who were also on ocrevus. It sounds like you are having positive results and no reactions to ocrevus so far! Yae! It sounds like you sure are on the right track! Do you mind me asking what stage your MS is currently in?
I plan to update this post twice a year, so we can all keep comparing the results we see from taking the therapy ocrevus. Please stay in touch and watch for my updated post sometime this early fall. They say the best results while taking ocrevus happened someplace in the 1 1/2 to 2 1/2 years of taking the therapy. So hang in there and keep on trucking along. Until we speak again please take care and remember together we are stronger!
1. My first doses were 02/14/18 and 02/28/18. My next dose is in August.
2. I have yet to experience any negative infusion reactions. Like you, the Benadryl almost made me fall asleep in mid sentence. A little throat tightened, fat tongue and cotton mouth.
3. Other than that, everything went smoothly. Took approximately 4 hours, not including the one hour observation period.
4. I have noticed that I am more stable in my gait and balance. I have also noticed that my thinking is clearer now and my mood is better.
5. On the negative side, I have noticed that my fingers/knuckles/wrists feel more tingly than usual. That was one of my first symptoms with this MonSter. Perhaps this is a good sign.
6. My issues with Ocrevus, and it more about me being anxious is: there is not much data on patients 55+ and older, and does Ocrevus get better with more doses. I cannot wait to see what else improves and is it improving.
I've had the first round June of this year. Only "Issue" that I had with it was the benadryl given prior to tratment that made me SO sleepy.
Then expecting something to change, and nothing happening was frustrating. Now that I'm post 4 months I've noticed that I do not need to pee 15 times a day. My energy level is more trustworthy (no longer sleeping all day on weekends). I'd love to get another brain scan to see if the lesions have shrunk.
I’ve just completed my 3rd treatment. After the 2nd half dose I experienced extreme fatigue for approximately 14 days. After the 2nd full dose I experienced extreme fatigue for approximately 18 days. I’ve not experienced any fatigue from the 3 rd dose on this past August 27. Feeling okay but still avoiding the heat. Also had no lesions on the last MRIs. I plan to continue this treatment. Except for the fatigue after the first two doses all seems to be ok
Found and signed up to this website today. I was diagnosed on X-mas Eve of last year. Turns out I've had numerous symptoms for years but just attributed them to one or more of my other illnesses, My first Ocrevus infusion is tomorrow morning. Will comment at some point after that.
I had my first full dose @ 2 weeks ago. Minor infusion symptoms. Major improvements in MS symptoms seen after first 2 1/2 doses. And now starting to feel like I’m improving even more. Gait, balance, energy, over all well being. I consider myself very very lucky! And while I call O my magic potion, I am not leaving everything in the hands of a drug. I have been working diligently on diet, fitness, and esp. stress management.
I have noticed hair thinning. I have always had very thick hair. Ocrevus or aging 🤷♀️But to feel this good, I don’t care 🌈
I hope and wish and pray others can feel this good too!
erash I am so thrilled that you have seen positive things with Ocrevus. I am as well, and my last infusion was 02/28. My balance, gait, and overall mood is better. Mood? Could it be Ocrevus or the arrival of Spring? Not sure, but I will take it! I am also working on my diet, fitness and stress management! Always a work in progress!
I realize this is a year later, but I received my first half dose on May 24th and the second half on June 6th. Slight rash while getting the first, which was rectified, and no reaction for the second half. However, I have been falling at least once everyday since the second week in June. I used to walk with a cane in public and without at home. I now MUST use a walker all of the time, even at home. When walking, I used to be able to 100 ft before I experienced extreme fatigue and pain, now I'm lucky to walk 10 ft before I can't take the fatigue and incredible spacticity and weakness. My next infusion is scheduled for December 18th. I may not allow that crap to be put into my body again. My neurologist said he's never seen or known of anyone else getting worse. Well, I did and am. Maybe I'm the first? I am, however, ecstatic for those of you whom it's working for. Regardless, I will fight the beast called MS to the best of my ability and try, try again with different options until I find one that works for me.
Just because you are the first to report these symptoms, raegun67 doesn't mean that it should not be taken seriously. I hope that you ad your neuro get to the bottom of what ails you, and in the mean time I hope that you have the improvements that I have while on Ocrevus.
How far along are you on Ocrevus, Carole? I just had my second full dose. I have experienced more energy since I started. I don't know what else, but I could tell precisely 4.5 months after the first full infusion that Ocrevus stopped working.
I will be receiving my fourth dose of Ocrevus at the end of this month. My first dose was in February 2018. I have had nothing but positive results since being on Ocrevus.
This is what I wrote back to erash (you probably didn't see it since there are a million replies here, so I will just copy and paste):
"I absolutely love Ocrevus! Just had my second full infusion today. I have had more energy. And it must have done something else which I couldn't pinpoint but could tell exactly 4.5 months after my first full infusion that it wore off. My right foot started dragging again at that point. I asked my neuro to put me on it every 5 months instead of 6. He is going to review my blood work and decide in November if he will do it. And have you seen - a lot of people here have mentioned that same timeline, 4.5 months."
I haven't had the Ocrevus wearing off after a while, or in your case, in 4.5 months. I have heard that some have had their infusion delayed because their B-cell was low. Perhaps that is what should determine the timing of their next infusion.
you want B cells at zero. That's the mechanism that makes O effective. Some are having other white blood cell decreases that are impacting their immune system and are delaying infusions and some neuros are ordering earlier infusions for those that are having wearing off symptoms...at least that's what people are saying in the FB site.
I meant to say 'their B-cells were still low' My question is, how long can the B-cells remain low before you need an infusion to help them remain low. I have always had a very high white cell count. Abnormally high. Since my diagnosis, and being on various DMTs, my white blood cell count is now in a normal range. Whatever normal is for me, anyway
There is an ocrevus FB site. A few people are identifying worsening symptoms. Some are getting off Ocrevus but some are sticking it out.
I went to a dinner seminar last night and the speaker said worsening can happen but it may have happened regardless of whether you are on Ocrevus or possibly Ocrevus lessened the worsening (speaker said and I’m just the messenger)
It sounds right to me. We don't know what the MS progression would have been like without Ocrevus. All of us woke up one day and experienced the worsening of the symptoms. How are you doing, erash?
Ocrevus has been really good for me. Some fatigue and increased right leg weakness as I approach my next infusion but if I try to remember a yr ago before starting O, I was really having far more symptoms
I absolutely love Ocrevus! Just had my second full infusion today. I have had more energy. And it must have done something else which I couldn't pinpoint but could tell exactly 4.5 months after my first full infusion that it wore off. My right foot started dragging again at that point. I asked my neuro to put me on it every 5 months instead of 6. He is going to review my blood work and decide in November if he will do it. And have you seen - a lot of people here have mentioned that same timeline, 4.5 months.
I will make a post about brain fog. I didn't even realize I had it until it was lifted after my second full infusion. You are absolutely correct, it is easy to forget how bad things were...
Eating well is very important. I am following the candida diet per Ann Boroch and am on antifungals. I have excluded sugar, dairy, gluten, corn and non-sweet potatoes. What are you eating?
1. I started Ocrevus on July 2018, right after diagnosis. but only had the two 1/2 doses. I am having the 2nd round tomorrow, or 12 month later, because Ocrevus wiped out a lot more than just the B-cells of my immune system.
2. No negative reactions whatsoever.
3. no issue.
4. Positive results are exactly what Ocrevus is expected to do: no new lesion and no active lesion on MRI at 6 months and 12 months
5. No negative (I might have to say after tomorrow)
6. Am i getting better? Yes, absolutely. But I think it's not Ocrevus, it's diet and exercise. Ocrevus was absolutely a must to stop the disease and further damage.
- B cells: CD19 (this is what Ocrevus destroys. In the litterature it says that Ocrevus is targeted at CD20 but you actually measure it on CD19 - go figure...)
- Nk cells: CD56
In my case, CD19 count was still at zero, 9 months after the first round of Ocrevus.
By my T cell counts, went really low (not zero), and did not bounce back until month #10.
So basically Ocrevus wiped out a good chunk of my immune defenses. This is a known side effect.
I haven't been sick since being on Ocrevus (knock on wood), at least no more than before. I am curious as to your infusion schedule. It seems that your neuro is monitoring your B-cells count to determine whether to schedule your next infusion. Am I correct? I am currently receiving my Ocrevus every six months. Prior to the infusion, they check my B-cell count and both times they are less than 1.0.
They check all lymphocyte subtypes - T, B and Nk cells. The neuro delayed my Ocrevus because Tcells were too low, (B cells were still at 0 so I was still protected from MS).
I've been on Ocrevus since April of 2018. I have noticed that it starts to "washout" at about 4 1/2 months . I don't have any medical issues with my infusion. I just don't get the boost like I did with Tysabri. Where I would stumble into the infusion center but walk out in a lot better shape. My walking has improved but if it's hot or humid outside my walking takes a horrible downward spiral. I have been experiencing in ability to tolerate warmer temps lately. My tolerance before O was low 70's. Now upper 70's before I notice the heat.
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Ocrevus has given me hope again. 
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