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

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