Hi all - I am really scared, have finished first 2 sets of Ocrevus on 3rd Sept 2020. Since then my balance has gotten worse (ankles feel like they are buckling) and random aches in my calves. It's weird because I feel it most when walking slowly but can "run" without feeling it as bad...
For those of you with similar negative experiences after Ocrevus, did symptoms improve when you stopped Ocrevus or did it just stay / progress? I'm scared it won't get better.
Hi I have been using Ocrevus for almost two years now and fortunately for me I have had very few side effects at all and very short lived( my fatigue was increased the day infusion, and mild infusion site reaction) . I know that all of these medications can effects us differently which is why I am so grateful for all the choices now available for us MSers, wish you all the best Robert
Hi Robert,I'm really glad that it's working for you. I did feel good after the first half dose, but one day after the second my balance kicked in. This went away after 2 weeks and I thought I started recovering, but now since the 3rd November I have been having persisting problems with my balance. I can still walk and all, but it's just really unpleasant. I just hope people, who have been in a similar situation, have reverted back to baseline pre-med. Fingers crossed...All you can do is hope I guess.
Best wishes,
Meg
Have my fingers crossed as well and wishing you all the best Robert
Definite worsening on Ocrevus. Whether it's due to Ocrevus or the disease natural progression/demyelination, no one knows. But here is a link to my similar post and 17 replies:
healthunlocked.com/mymsaa/p...
Hi IFwczs,
Thank you for your reply. Did you end up discontinuing Ocrevus and did you get better afterwards? I read a guy on your post said they feel better after discontinuing.
I actually had MS for 10 years when I was in my early 20s and I would usually get a relapse after illness. I haven't been on any other DMT. What I am experiencing now just came out of the blue, but no idea and I'm pretty sure I am experiencing some reaction to the drug.
I'm trying to figure out what could be the biological reason for what I am experiencing (cytokine storm?) but I think I am just guessing and wanted to see how the rest of you are holding up 
Thanks,
Meg
Thanks for your response. I am planning on having another infusion in February (but that's probably it for a different reason).I have progressive MS, so I can't imagine getting better on my own. But certainly not with Ocrevus, I think it's just probably useless to some of us.
Was Allen5280 the guy you are referring to who got better after stopping it?
Hey IFwczs,
Yes it was Allen who I was referring to why do you ask - is there something I missed ?
Also I'm sure you considered this already, but what about trying HSCT or a different drug??
Best wishes,
Meg
No, I have chatted with Allen about it, that's why I knew.I have progressive MS, so there are no other drugs. And HSCT is also for RRMS, but I would never consider it an alternative to DMT. (Plus I don't think it's FDA-approved).
It is a bit risky, I wish pharma worked at the same rate they worked to get a Covid vaccine but in order to find a better MS treatment :<
It's frustrating - I don't know if Ocrevus turned RRMs into SPMS now... it's just wait and see... fun and games 
but i rather play different games than a waiting game of this nature.
Meg
No, I haven’t experienced that since being on Ocrevus since February 2018. Let your doctor know of this and please keep us updated on this, if you can, Megan33
Thank you carolek572 , I'm really happy you are doing well. My neurologist got hit by a bike and isn't seeing people at the moment. Hope I can get through to him soon.
Best wishes,
Meg
Given the severity of his injuries from that bike it sounds like Prof G isn't going to be back at work for maybe another couple of months , so it's probably a good idea to talk one of the docs who are standing in for him for a while rather than waiting until he does get back to work.
I’ve just had my 7th Ocrevus infusion. My MRIs show it’s keeping my MS stable so it’s doing it’s job. I’ve not had any relapses nor any new or worsening symptoms.
Have you actually had this checked out by any other doctor or are you just assuming it is related to MS and/or Ocrevus? Because MS can be very random in the symptoms it throws at people there are far too many people who just assume that something is from their MS or is a drug side effect and don't get things checked out when they should. Your first port of call should be your PCP/GP to make sure that it isn't something simple like an ear infection or BPPV. For example, if your balance is off because of an ear infection you could be walking differently which might be a cause of the ache in your legs, or the two things could be totally unrelated and just a coincidence. Not everything that afflicts a PwMS is caused by MS - we are still just as prone to all the other health problems that people without MS get.
Hey Frances,I know exactly what you mean and I am definitely guilty of this...always pinning stuff on MS, it's just that I've been fairly cautious with what I do and staying in the flat alone and all of a sudden this balance stuff arises... the timing is too perfect to blame on anything else but this, but I am about to get my ears checked out now so let's see what happens
Meg
My symptoms get worse toward the end of an infusion period, just like many others who call it the “crap gap”. However, something like you describe (if it’s a new symptom), plus even considering a drug change, would lead me to a chat with my neurologist. In fact, she brought up a drug change at the 1yr mark since everything was markedly worse, but we decided against that since there was no evidence of a relapse (Ocrevus is working for me), I had plenty of other reasons for things to be worse, and my drug options are limited. Hope this helps!
Hey Kdali,
Yes before starting treatment I read about the "crap gap" and was ready for dealing with that when the time came. Instead my "crap gap" seems to have gotten redefined to the whole 6 month period in between infusions 
I'm hoping that once the drug is fully out of my body, that I will be able to heal slowly but surely... Christmas prayers!!
Best wishes, Meg
I hope so too!! Are you planning to start anything else, taking a year off, don’t know yet?! I like to ask just in case I’m making this decision myself 🤔
I'm trying to get a house in London so going to buckle down and work hard at work. I'm expecting to "retire" when I am 42ish maybe so need to survive for the next 10 years in a decent manner. Not fun, but at least it keeps you busy with a goal right??
Ocrevus, is it the right one for me?
What did it feel like when you started to have difficulty walking?
Been a while! What do you do for pain?
When you were a kid what did you do to entertain yourself?
Ocrevus.
