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- Have you tried Ocrelizumab (Ocrevus)?
Have you tried Ocrelizumab (Ocrevus)?
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I will get my 4th infusion on the 14th. I have consulted the Ocrevus hotline and am prepared to combat the persistent side effects of the infusion so that I can once again claim the victory of halting this disease where it is today. Just take a book or something to do since it is a day-long process (about 6-8 hours)...I take my knitting and usually finish an item during the process..and it makes the time go by faster if you aren't just sitting there...the last 3 times my husband was able to go with me...still waiting to hear if he can accompany me this time with COVID 19 rules in place everywhere.
@TCrisafulli You're still having severe side effects? Do you know if that's common among people on it? I agree, I think sometimes it's easy to get a bit over hopeful because we're needing and wanting any sort of sign of progress.
I had my first full infusion of O on July 10. I was doing pretty good but about two weeks after I began to have symptoms that I hadn't had before. For example, electrical burning in my legs and arms. More weakness than before in my appendages. And so much more pain. I am, now on a pain med that is normally used for seizures. The doctor hopes this will work to get my brain to stop causing these symptoms.
Hello, everyone. I have been on Ocrevus for almost a year. I like the way it makes me feel. The only negative I have is that my walking has not gotten better. I still drag my right foot when I walk. I have not gone to physical therapy in about eight months because of the Coronavirus.
I go for my 4th Ocrevus infusion in Nov after each infusion my balance has become worse & my walking has gone from walking a mile a day to 500 feet. Does anyone else have these problems
I was gonna to go back on rebif after being off of it for 4 years now. But now I am thinking of trying this but am worried about serious side effects. Lowering your white blood cells and risk of shingles. I had a mild outbreak of shingles a year ago. Also saw you could have a swelling in throat and serious reaction to it and might have to go to hospital. Also didn't like that you could have upper respirtory infections while on this.. Have you had problems with upper respiratory infections while on this?
@TCrisafulli I was on Avonex also for about 4 years it was awful I stopped it and thats when my doctor told me about rebif. I was doing okay on it except for all the shot bruises and trying to find a area I hasn't used. I stayed on that for about 3 years. Stopped cause I was doing so good thought I could try to go off. I did well until this summer when I got a 1 inch long splinter in my foot. It sent me into a ms flare. Went on steriods and it mostly went away but now my feet are starting to turn numb again so I was going to go back on the rebif cause the side effects aren't as scary as the ocrevus. Don't know if i made the right decision rebif is going to call me in the next 24 - 48 hours.
I'm so confused 2 dr's say walking and balance not a side affect but people that get the infusion say it is. I am going to trust my body & ask my new Dr to try something else he suggested Mayzant
@Jenn0624 Hi - my doctor told me that taking Biotin would be helpful in case of hair thinning. Perhaps check into that?
@maryanna I've been on Occrevus for 2 years and not sure it's working for me. I have another infusion scheduled for the beginning of December and this might be my last one but not sure what to try next....? Anyone have any suggestions? My walking has not improved - I felt better when I was on Gilenya.
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I am currently taking Beta interferons and participating in physical therapy 3x a week. I also try to get sufficient rest each day and eat organic to help my body recover.
However, I learned of the new drug Ocrevus, which was just recently approved by the FDA. Has anyone tried it? An recommendations.
According to the Mayo Clinic, it says it treats both the relapse-remitting and primary progressive forms of MS. Clinical trials showed it reduced relapse rate in relapsing disease and slowed worsening of disability in both forms of the disease.