Have you tried Ocrelizumab (Ocrevus)?

     I have PPMS, and have been on Ocrevus since the fall of 2018. I have had zero complications taking the infusions and will continue to take it since it is the only approved treatment for PPMS. 
     If you have questions regarding these infusions... ask away!! 

@broadwaylady 

Hi, 

I started with ocrevus last year.  No problems with the medication and it is easier than self injections or pills every day and my ms symptoms have stayed the same for the most part .  Only problem is being still for hours with the infusion and having to stop intermittently to go pee as they push a lot of fluids over a 6 hour period. ;-)

Lisa McGuire

Hi Everyone 

interesting reading all your comments, so I thought I would add my experience.

I am part of the original trial that was set up for Ocrevus in the Uk for patients with PPMS. I have now been having infusions for 8 years (apart for 1 missed during the height of the pandemic) and have never had any side effects. The effects on my MS is difficult to quantify as I have nothing to compare it to. My walking and fatigue have got worse over the years although lockdown, I think, has added a bigger decline. My walking has gone from pretty much normal to really struggling now and need a Walker pretty much all of the time. Like a lot of you I have weakness down my left side which has deteriorated as well. Unfortunately I have not been able to access my MRI scans till now and am waiting to see my neurologist to discuss them.

Has Ocrevus helped? I don’t know but I do know that the infusion time has been reduced to 2 hours now so shorter. I shall carry on at present as there is nothing else out there for PPMS. Hoping something new will be discovered before it’s too late for me.

Chrissy 

@MyMS55 

Hi, I wanted to ask how you find the upwalker as opposed to the roller type? Been thinking of getting one as my balance and foot drop are getting worse.

Thanks

Chrissy 

@MyMS55 

Hi, I wanted to ask how you find the upwalker as opposed to the roller type? Been thinking of getting one as my balance and foot drop are getting worse.

Thanks

Chrissy 

I have been on Ocrevus for almost a year and a half. I have no complaints.

I was on Ocrevus for 2 years but my neurologist has had to take me off it because it made my IGA, I GG and I GM very low a d left me susceptible to severe infections so I am waiting for Medicaid to approve Vumerity.

My neurologist just took me off of Okrevus because my white count is messed up and it never recovered very well from the previous 6 months ago so they feel that it's better to take me off of it. I'm stable at this time so with my age they're considering trying me with no medication at all. Last week I had my last dose of Okrevus.

I have been on Ocrevus Infusions for almost 4 yrs now , have had absolutely no problems with the infusions . At 1st it made me feel better & I still have no new active lesions , but it seems that with this last 1 that it doesn't seem to be lasting as long , I don't know if the pandemic & not being able to be out & mobile and/or that I retired August of 2020 & haven't been as active , but I've put on at least 15lbs ,& symptoms seem to be getting worse in the last 6 months .

I take Tysabri and have for 8 years , I can tell when it’s time for me to get my next infusion.