Opinions please...: I have been told that... - My MSAA Community

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Sggmcswain profile image
12 Replies

I have been told that all Ocrevus will do is slow down progression. Will it not help with walking and other symptoms.

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Sggmcswain profile image
Sggmcswain
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12 Replies
ssdw1958 profile image
ssdw1958

I do have to say first night my legs weren’t working well but I got a little bit better as time went on. Granted it’s not a miracle drug. But there is something there. I will see after my second dose.

dianekjs profile image
dianekjs

Are you RRMS or PPMS (or SPMS)?

Sggmcswain profile image
Sggmcswain in reply to dianekjs

RRMS

dianekjs profile image
dianekjs in reply to Sggmcswain

Many people with RRMS have seen significant improvements but it can take 6 months or even beyond a year, so try to be patient. The RRMS trial results were quite impressive, both in terms of decreased disability and decreased frequency and incidence of relapses. Progression was pretty dramatically slowed or halted in all forms of MS. As with all drugs, there’s a lot of individual variability. Some PPMS trial participants also saw improvements in symptoms but they tended to be more modest.

bavery207 profile image
bavery207

Sggmcswain I also have read that at least some of those with RRMS have shown some remarkable improvements. It is those with PPMS that may experience a 24% decline in progression, but they (we) had nothing before so even that is something!

Fancy1959 profile image
Fancy1959

Sggmcswain, it's Fancy1959. I I am on ocrevus and have been for about a month now. I believe we all need to be patient and allow this drug to have time to see the extent of the effect it will have on MS. Remember each and everyone of us reacts differently to each and every therapy out there. And each therapy is affected by so much such as our stress levels, our day-to-day environment, our diet, and every single thing we put into our bodies such as smoking , alcohol, etc. My Neurologist was involved in some of the early testing on ocrevus actually did some of the blind studies on the drug. He thinks very highly of the therapy and believes we will see good things come from it. We simply need to give it time to accrue the data to back up the good things it does. I know patience is hard when dealing with such an invasive monster such as MS. But remember nothing good happens overnight. Stay strong and together we can be even stronger!

Diva1976 profile image
Diva1976

I have heard people say online that symptoms improved for them. The one that I heard the most was mobility. Being able to walk better. I'm on Avonex and waiting for opportunity to give Ocrevus a try. I've been on Avonex since March of this year. I think a decent amount of time to see if things would change. It stabilized me but my mobility is worst. I'm hoping Ocrevus will change that. Before I was under the impression that I just had to live with the new normal of symptoms and be happy thing are stable. But now I hear its meds that can do both. I'm wishing upon a star for us all to feel and be great!

Diva1976 profile image
Diva1976 in reply to Diva1976

Not Avonex but I'm on Aubagio. I was on Avonex before Aubagio. Scatter brain with the A's

RobertCalifornia profile image
RobertCalifornia

I am on Ocrevus and I have PPMS. My neurologist said to give it two years before judging it. I have the feeling she was involved in the testing as she has talked to me about the drug for over two years. And what is bad about slowing down the progression of the disease. Almost everyone progresses just at different rates and in different ways.

Sggmcswain profile image
Sggmcswain

Just wanting to know if anything was to happen

Nom_De_Plume profile image
Nom_De_Plume

@sggmcswain

Yes and no. Yes, some of the objectives for the clinical trials were to determine whether or not Ocrevus reduced the rate of relapses, and to determine whether or not it reduced the rate of progression. There is hard data to support the claim that it does both of these.

The studies did not measure whether or not patients had improvements because they were not designed to do so.

Anecdotally, however, there have been numerous statements from patients that they have experienced improvements in various ways.

Sggmcswain profile image
Sggmcswain in reply to Nom_De_Plume

Thank you

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