Ocrevus 1 month update!: Hello everyone it... - My MSAA Community

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Ocrevus 1 month update!

Fancy1959 profile image
16 Replies

Hello everyone it is Fancy1959. I had my second initial half dose of Ocrevus on October the 2nd. Please remember that each individual response to every therapy differently and results can vary greatly from Patient to Patient. Over the past month I have had no negative side effects from the Ocrevus infusion. On the positive side I have noticed two definite improvements. The first thing my spasticity has calmed down quite a bit. It's not as severe now and when it does strike I am able to regain control of my muscles much quicker and bend my legs and work through spacidic episodes.

Over the past week I have noticed a new improvement. I have had for over a year difficulty walking very fast even with my rollator in front of me. When my phone would ring if it wasn't right with me I very seldom was able to answer it before thee voice message picked up on it because I could not stride out and walk at any speed. My steps were very short, choppy and very uncoordinated. It didn't even dawn on me at first that I was getting to the phone before the voicemail picked up more and more often. Then I started to pay attention and noticed I was walking stronger with longer, more coordinated strides. That is of course when I'm fresh in the mornings. When I get tired in the afternoons all bets are off and I find I'm just plodding along again with short uncoordinated steps. But at least I've seen signs of improvement. Pray they keep increasing and the walking become stronger and stronger. Still no improvement in my balance but here's hoping it will gradually start to improve sometime in the future.

I encourage everyone who have started Ocrevus share their Ocrevus story, both positive and negative, with the chat room to provide everyone with as much information on his new therapy as possible. Keep your fingers crossed that this therapy continues to show signs of Hope for more and more MS patients.😊

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Fancy1959
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16 Replies
Morllyn profile image
Morllyn

Fancy1959 🤞

erash profile image
erash

Fancy1959 i am so thrilled you are seeing those positive changes (and it's only the 2nd dose!). Here's hoping you continue to improve 👍

Yes, please, everyone keep us updated on your responses to Ocrevus

mrsmike profile image
mrsmike

Wonderful news! Glad to hear that you have seen improvement.

kaitlynmsaa profile image
kaitlynmsaa

Thank you for sharing, Fancy1959 . I'm glad you're seeing some improvement with your spasticity!

jimeka profile image
jimeka

Fancy1959 its sounds quite positive, I pray it continues. I hope everyone will keep us updated on the Ocrevus. Blessings Jimeka 🦋 🌈 🐴

kdali profile image
kdali

Great update! I'm glad you are noticing improvements already, and I hope to hear about more 🎉

CalfeeChick profile image
CalfeeChickCommunityAmbassador

Exciting news and hope for you to continue improving and love hearing from you.

Doubled51 profile image
Doubled51

Fancy1959 that's great news. I'm so happy that things are looking better. Praying the improvement continues. God bless.

Donnie

WAshingtongirl profile image
WAshingtongirl

That's the best news, Fancy1959 ! Praying it only gets better. 💕

Raingrrl profile image
Raingrrl

Fancy1959 ...thanks for sharing your experience! I'm so glad you are seeing some improvement. I hope Ocrevus continues to be beneficial for you! My first dose is Dec. 8th.

melack01 profile image
melack01

Fancy1959 I am so happy this is working for you. Praying for more and more improvement.

Mmantia profile image
Mmantia

Do you have PPMS?

BillD999 profile image
BillD999

Fancy1959 Thank you for the progress report, I'm very glad you are seeing improvement & let's hope that continues.

Elle61 profile image
Elle61

Hi All, this is Elle61. It has been 3 months since my 1st Ocrevus infusion . I don't notice any changes . at first spasticity was a bit less but now I don't feel any changes. Bummer!

I have an appointment this week with my new Neurologist and I hope she can help me decide if I should continue or not . I am still holding on for the new mylan repair drug coming soon.

Comfortably_Numb profile image
Comfortably_Numb

Hi, Fancy1959. In just over two weeks I will have my second of the two yearly Ocrevus infusions. I’ve had a total of, I don’t know, four or five so far. I don’t notice anything different, either good or bad. I mentioned this to my neuro’s PA, and she asked me what I was expecting. I said, “To be able to walk again?” She explained that this drug was to stop the progression, not to undo anything that’s already happening with me. Really exploded the balloon I was living in, I went home and cried. Never get any better? So, I dove right in to the e-mails that come from the MSAA, etc., and now I see what I should have seen all along, just what the PA told me. I can live with that, I really can. I’m a happy woman, I believe I’ve been blessed my whole life with the amazing people around me, from family to friends to colleagues, I’ve had it good and I know it. So, I can live with no improvement, this isn’t as awful as it could be.

P.S. Love that doggie in your Avator!! Cute!

REDLIPS44 profile image
REDLIPS44

Happy for you Fancy1959 I had my very 1st in July I am RRMS 19 years and I also use a walker, will get my first full dose in Dec. I just want the progression to stop, Lemtrada did not work for me. Wishing all of us lots of luck.

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