Seeking feedback on Ocrevus for PPMS, esp. from those 10-30 years POST DIAGNOSIS

[jab54]

Seeking feedback on Ocrevus for PPMS, esp. from those 10-30 years POST DIAGNOSIS but others too

Hello, interested in hearing everybody's feedback on their Ocrevus experiences. I am 54 and have had MS for over 30 years, and like all of you I am trying to halt further progression. What have your experiences, side effects and symptoms been like while on Ocrevus? Has the fatigue been worth it? Have you measured your progression or improvement with MRI's or by other means?

One other related question: Are any of you looking at remyelination studies or ideas. I'd love to hear about any of those!

I am due for my 2nd infusion in March or April.

[jab54]

Okay, there have been a bunch of views but no replies, which I'm guessing is because I mentioned how long I've had MS.

I am also interested in the experiences of other individuals with PPMS using Ocrevus. Any thoughts on these questions:

Has it been worthwhile? How has your fatigue been? Do fatigue levels go up or down after multiple infusions [again this is just my 2nd coming up]? Are you experiencing any other significant side effects? Have you been more or less active? Have you been experiencing any difficulties with bowel movements?

[ElliotB]

"bunch of views but no replies"

Perhaps few on this site meet the criteria you presented, after all the drug was only approved about a year ago, and there has been minimal discussion of it here which leads me to believe few on this forum are taking it at this point.

[jab54]

Thank you, ElliotB. It is unfortunate, for me, but I think that is exactly correct. I do wish you, and everybody else here well. I'll post again further on about my decisions and future outcomes.

[HarbourBoy]

Hello I was diagnosed in 2005 PPMS
Started Ocrevus June 2018
I’m two full doses in. No more fatigue than before. Chronic migraines have all but disappeared. Can stand for longer and easier. The jury is still out on my balance. Still bladder urgency. Overall I feel better. Am 59 years old. Had a bad cold in September that required antibiotics. Was a lot longer recovery time than normal for sure. Not much data on us over 55. Am hoping for a little more time until something better comes along if ever. It’s giving me a little hope again and that’s huge. Good luck and keep us posted. Thanks. I would recommend it so far. I tolerated the infusions no sweat and returned to work next day. I had medically recorded symptoms 10 years before diagnosed so it’s been a while. 14 years since diagnosed but 24 since first symptoms. Just been a slow steady decline but now ??? Hope I’ve been some help.

[jab54]

Thank you HarbourBoy. That is exactly the sort of informative feedback I was hoping for. Our progression is very similar in years since diagnosis. I'm glad it has been worth it for you so far. Will be rooting for you. Some of my allergies appear to have become less sensitive. Fatigue I'm unsure of. Definitely, let's keep each other posted on our progress or symptoms.

[HarbourBoy]

Yes it’s unfair to anyone reading , for me to jump to too many collusion’s here but I’m happy I was at long last prescribed a DMT and now have more feeling better days than feeling worse ones. It’s been a slow steady decline over a lot of years to get here. And suspect a claw back would be over around the same time. Not overnight. Any way it’s always hope. I think our bodies will have to do the healing. The drugs just send it in the right direction to be able to do that. Pretty new drug so it’s nice to share experiences. Good luck

[Optimistic99]

"I am due for my 2nd infusion in March or April."


Hey Jab,

Thanks for sharing for experience of first infusion, have you gone for a second one? How's the response?
Hope you feel better