Hi, I am 40 yo female, diagnosed 9 years ago. Hadn't had any relapses since my initial one, been on medications until 3/2017, when I decided to have a baby. Was breastfeeding 2/2020, had to stop to take steroids to help with relapse. So now I am waiting for approval for Ocrevus, but in light of the Corona issue, I am pretty scared to even go get the infusions, and also because any serious reaction would likely mean I would have to go to the hospital, and that's a terrible thought right now! And the risk of upper and lower respiratory infections coupled with weakened immune system during Coronavirus almost seems not worth the risk. I am 100% secluded at home during all this, so the infusions would be the only time I would leave the house since I was there last for steroids (3/16). The steroids seem to have the attack under control, I am doing pretty well, just a bit more tired than normal. So my question is has anyone tried Ocrevus and what were the side effects, and would you deem the risk worth it if you were me i.e; no major symptoms needing to get under control, current pandemic, and toddler at home?
Decided it was worth the risk, got first 1/2 of first infusion yesterday. Was somewhat concerned that because I am getting the medication free from the drug company, only one place will do the infusion, and it's in a large, multi-office place with one room for five patients at a time, as opposed to the single function facility with private rooms I got my steroid infusions at. So I spent five hours wearing an N-95 mask, super uncomfortable, but I saw at least 8 other patients come and go while I was in there, and every single one of them either didn't wear a mask, or took them off as soon as they sat down! But no side effects from the meds so far, going back in two weeks to finish.
my question is has anyone tried Ocrevus and what were the side effects
I've had a year and a half of Ocrevus infusions with no side effects or problems. But I know one PPMS MSer who was getting Orevus for years while it was under trial and she gets every side effect in the book (she still uses it because other DMTs impact her even worse).
So I guess the answer is YMMV. But overall, stats say that Ocrevus has few side effects.
and would you deem the risk worth it if you were me i.e; no major symptoms needing to get under control, current pandemic, and toddler at home?
Oh com'on, only 1 toddler? (laughs the father of 5, two of them twins) :-)
I had the same decision to make. I had my Ocrevus infusion in the second half of last month in a large VA hospital in a city which already had a few Covid-19 cases.
Everyone has to calculate their own odds and make their own decisions, but I chose to get the infusion. I'm more concerned with MS than I am with Covid-19.
And like you, my "social mobility" tends towards "social isolation" for the next couple of months. I've gone so far as to order my groceries at the local store online and then just drive to pick them up, and my main outside activity being spring yardwork and riding my trike for aerobic exercise.
I started Ocrevus this year, after 10+ years on Copaxone. So far, so good. :) The infusions are time consuming and I experienced side effects from the steroids given as part of the infusion (Tired, weak, etc.), but I'm loving no weekly shots! Based on my experience, and that of a friend, I recommend it for treatment. Stinks that it impacts our immune system, but I believe almost every MS drug does... at least to some extent. Good luck!
Haha, yep, only one toddler! We also order online and pick up groceries, and my boyfriend does that. They ask you questions about people you have been in contact with, illnesses, etc when you go into medical facility, I just told them that they were the only people I had talked to in person outside my family, in over a month! They laughed like maybe I was joking! We are trying to teach our son to pull weeds at the moment, as yard time is pretty much all we have going on now.
I have had two infusions. No side effects, except from the darn steroids! I have been stable, and I was previously showing disease activity on first copaxone, then aubagio. So that is worth a lot to me.
The immune part (suppression) is scary, but definitely worth it to me!!
No side effects, except from the darn steroids!
I'm sorry to hear that. But let me give you a different perspective.
the steroids -- that's the best
part of the infusion.
Do note: if I take oral/pill prednisone I go literally crazy -- 'roid rage psychotic. It's happened more than once.
But with the IV prednisone like they give with the Ocrevus infusion, I get an energy boost that is out-of-this-world great and lasts for 24-48 hours. I plan yard work or some physical activity after Ocrevus infusions!
My neurologist is aware of my quirks, has me listed as being "allergic" to oral prednisone, and assures me that there are logical medical reasons as to how the body deals with the two different types of prednisone. He's happy, I'm happy so it's a win-win deal.
MS doctors have be a twisted group to deal with all of our individual quirks, don't you think? :-)
I've been on Ocrevus for over 2 years. Unfortunately,the drug itself has suppressed my immune system more than the MS itself. My bloodwork proved it and my Neuro is top notch,runs an MS center in one of the largest and finest hospitals in Chicago. The Ocrevus,which I had such high hopes for,hasn't stopped or slowed my disease,I've continued to get new lesions and lost a lot of ground in the last 6 months especially. It's the most expensive MS drug in the market,with average cost of $119,000 per year. Now that it's actively harming me I'm being switched to another drug. I'm not trying to scare anyone,just putting my experience out there. It wasn't anything I was warned could happen. Best wishes,Laurie