Newly diagnosed

[ShayWelch]

Hello MS peeps. I recently got my PPMS diagnosis in July. Think I've had the symptoms for a couple of years. Going to be starting Ocrevus soon and was wondering who has been on it? Are you seeing any improvements?

[NorasMom]

I tried it and had too many complications to keep going after the first two half-doses, but I still believe it's the best drug out there right now. Just be prepared for your infusion -- take a drink, snacks, and some form of quiet entertainment.

[twooldcrows]

yes it has been great ,been on it since 2017...really did help to improve walking and my life is so much better ...really like it ...enjoy life ...

[jkdavid99]

Been on ocrevus for about 3 years now. It is keeping me stable. No new lesions. No side effects for me. It is s great drug. Good luck

[SandraKOE]

Next week is my 2nd full infusion. I credit the steroids for feeling better the week after. As for the ocrevus, I can’t really tell. I have no side effects or adverse reactions. They could be infusing me with saline or liquid gold. But MRI’s show no active lesions. So I guess it’s working. When I was on Vumerity I did have active lesions.

[mrsmike9]

Best wishes sent to you!

[Mollyabigail]

Welcome, ShayWelch! I had my 6th Ocrevus infusion last week. MRI yesterday said no new activity, which is a blessing from God. My heart beats real fast for about 8 hours following an infusion. But they say that's normal. I just lay around a lot that evening. The steroids keep me awake that night, and I DRAG through the work day the next day. Lots of coffee!! Some say their symptoms improve after an infusion. Some do not. Ocrevus just slows the progression, but maybe you will see a difference. Fingers crossed!

[tompumo]

I've been on O for 5 years, copaxone before that - was diagnosed in 2011. Ocrevus does not relieve symptoms, it slows progression. I had 1 relapse while on copaxone, none on O in 5 years.

[Tazmanian]

I'm on ocrevus I don't know if there's any improvement but I haven't got worse that's the idea isn't it

[ahrogers]

I have PPMS and have been on it since 2016. Minimal mild side effects for me. There are reports that a small percentage of people see some improvement in symptoms. I didn't have any improvement but haven't had any new lesions since 2016. It is the only approved DMT for PPMS currently. I think some of the btki clinical trials will be done soon so, may have other options in the next couple of years.Be sure to exercise at the best of your ability and request referral to physical therapy if needed.

[hairbrain4]

I tried it for two years. The first year it worked great. My symptoms faded to almost nothing. Then I started having problem after the 3rd dose. My symptoms returned with a vengeance. The 4th dose felt as if it was just water because I was hanging a full blown relapse. That was my last dose. I'm on Vumarity now. It's working great. I hope Octevus works for you as it does many others.

[anaishunter]

ShayWelch welcome! I'm 57 and have been on Ocrevus for 5 years. It stopped progression - no new lesion, no active lesion. Brain fog is gone and I feel my brain is back to when I was 25. I have residual symptoms, like foot drop if I walk too much (regular exercise helps) and low tolerance to heat but nothing that prevents me from having a normal life.

I've had no side effects whatsoever but you owe yourself to be careful about infections under Ocrevus.

You'll probably be fine and will be able to keep many of your symptoms at bay.

[lbenmaor]

I'm not on Ocrevus but I've heard good things about it.

Leslie