Log in
My MSAA Community
3,861 members7,564 posts

Ocrevus

Well I started my Ocrevus and I go back in 2 weeks for the 2nd infusion. I was off Tysabri for 4 months and I don't feel any different. My doctor had a problem getting my meds at the facility I was supposed to go to, but I now get it done at the clinic there. I'm wondering if any of you have had the same problem in getting your meds? I don't know how much being off Tysabri for so long is having an effect on the Ocrevus. According to my doctor, I have a severe case of MS and I'm not sure how my body supposed to feel. I don't feel any different. I still slur a lot, I still need my walker to get around, I was hoping this new med would change this. Wishful thinking on my part. Has anyone else experienced this at all? I don't know how I'm supposed to feel

Shelly 😑

13 Replies
oldestnewest

Shelly36 i think from what others have said that it's not an overnight wonder and you have to give your body chance to get used to it. Keep us informed to how you get on. Blessings Jimeka 🦋 🌈

7 likes
Reply

Thank you Jimeka! I was starting to wonder if I made a mistake on switching my meds.

2 likes
Reply

I just want my bodyback!

5 likes
Reply

Shelly36, I'm on Ocrevus also, I just completed my second half-dose a month ago. It's WAY too early to be expecting improvements from the medication, I was told it would take a minimum of 3 months and possibly a year or more before we would be able to evaluate effect. For aggressive MS the primary objective is to halt progression, and Ocrevus did a truly amazing job of that in the trials for all types of MS. Do you know if you have PPMS or RRMS? Trial participants with RRMS had impressive improvement in symptoms, while those with PPMS had more modest improvements. Stay positive and patient and hopefully in several months you'll be noticing benefits. Keep us posted, and I will do the same. 😊🙏🏻

6 likes
Reply

Thank you Dianekjs, I have ppms. I'm scared it won't help.

Reply

Shelly36 You are in my thoughts and prayers today.

2 likes
Reply

Shelly36, I understand your apprehension, but let's give it time to work. Even if it just stops the progression that's pretty huge, but hopefully it will restore some measure of lost function as well. I will keep you in my thoughts. 💙

2 likes
Reply

I'm starting ocrevus this week, if they can get all the paperwork together. Only been off gelenya for a few days and feel terrible. Not looking forward to infusions but I only got diagnosed a few months ago and an already in a wheelchair. Hoping ocrevus can give me some of my future back.

2 likes
Reply

My understanding with Ocruvis, it takes a few doses before you get the full effects.

I My self am waiting on getting the Ocruvis. It has taken my Dr a little bit to get approval. The approval has gone thru, now I am waiting for the infusion room to contact me.

I wish you the best of luck on the Ocruvis!

2 likes
Reply

I have had my first two infusions of Ocrevus. It was in June of this year. My neurologist told me not to expect improvements but hopefully it stops the progression of MS. I have PPMS and I will accept staying the same as I am now. My neurologist said to give Ocrevus one to two years before deciding on its efficacy. She is a MS specialist and gave the first infusion in the state of California so I trust her implicitaly. The infusions are not bad. Take an I pad or a book or just sleep.

1 like
Reply

How are you feeling today?

Reply

Hello, I also just started Ocrevus with my second infusion scheduled for August 15. I have not noticed any changes yet, except for being more depressed and irritable.

1 like
Reply

I had my 2nd infusion of ocrevus today. I feel tired and irritable. No change in my body just yet, but I'm crossing my fingers!

Reply

You may also like...