Ocrevus.

[dailygrump40]

Does anyome on Ocrevus have a period of time between infusions where they feel off? Kinda like Tysabri where you had 3 really good weeks then 1 where you could tell you needed it again. If you do, when did it start out of the 6 months between infusions. I've just been feeling like crap lately and was wondering if that's what I'm experiencing.

[Iona60]

I have increased spasticity and more sleep issues for up to a month prior to Ocrevus infusions.

[dailygrump40 in reply to Iona60]

My next infusion is May 22nd and my spasticity has been weird. I have a baclofen pump so my spasticity is usually under control. Same day different times of the day my legs will go from slightly stiff to wobbly. Slightly stiff means turn the pump up. Loose legs means turn it down or heres a really good one. My leg will get bouncy (spastic) at the knee when sitting, but if I stand up, my knees will bounce. Which means the pump is to high causing the muscles to not have enough control of the joint. It's hard to understand. Yes. My sleep's really screwed up. I'll be aware between 2 and 3 and not feel like I sleep the rest of the night.

[Iona60 in reply to dailygrump40]

Overall I'm having good results with ocrevus.

[erash]

Overall, I’ve had consistently good effects. At first it felt like my MS was gone but it’s still there with stress, heat, fatigue

[dailygrump40 in reply to erash]

That's good to hear that you aren't having any issues with it.

[56728134]

I've been on Tysabri for 4 years. There are no changes in my MS between infusions. My issue is balance/gait which never takes a 'holiday' meaning it's w/me every day and falls are very frequent. My doctor feels I'm going into the Secondary Progressive stage of MS however there are no new lesions appearing on MRI (given every 6 mo). He is considering changing to Ocrevus however no guarantee balance/gait issues will be any different. Did Ocrevus help w/any on-going symptoms. i.e. can you see any improvement affecting your activities of daily living by taking Ocrevus? thanks.

[dailygrump40 in reply to 56728134]

I have seen improvements. But I am on So many meds that it is harder to say it has improved my walking, which I take Amprya for. My walking is better. I don't fall nearly as much as I used to. I can catch myself before I tumble. My memory is a lot clearer. No cogfog. I will give you a heads up. Switching from TY to Ocrevus can be a long road. When I switched I felt like I was going downhill really fast. Then one day it just turned around. Don't give up on it. It's worth the fight.

[56728134]

My doc thinks my positive attitude is my saving grace. I rarely feel sorry for myself because when I go for my infusion once a month I see many women/men having infusions for cancer. I walk out saying two things to myself. Thank God I don't have cancer and thank God I don't live in Syria - no one is shooting at my children, we have a roof over our heads, etc. This kind of thinking encompasses my whole being.

[carolek572 CommunityAmbassador]

dailygrump40 Since being on Ocrevus, I have noticed that my balance and gait are better, as is my thinking and overall mood. I have yet to see if those improvements wain as I get nearer to my next infusion. I have only had 3 infusions (that is counting my first two half infusions as one) so perhaps I have yet to feel that. Like 56728134 I truly believe that attitude us everything, so

Keep Smiling,

Carole

[dailygrump40 in reply to carolek572]

When is your next infusion? Mine is in May. We are on the same number of infusions. My first half infusion was on April 26, 2018. Second half May 10, 2018 first full infusion was Nov 15, 2018. Walking after the infusions was interesting. Hopefully walking right after sitting for hours gets better.

[carolek572 CommunityAmbassador in reply to dailygrump40]

My next infusion is scheduled for August 29th. And yes, I wholeheartedly agree with you, walking after sitting for 4+ hours was a challenge. I must remember to take it easy right after, though. Thank goodness that my infusion center is connected to the hospital so the EMTs would not have to go far to respond to my emergency! LOL dailygrump40 Please keep in touch, and let me know how it goes with your infusions, good, bad, or indifferent! I will do the same!

Keep Smiling,

Carole

[dailygrump40 in reply to carolek572]

My infusion site isn't connected to a hospital but the nurses and doctors are very good and I'll keep you posted.

[carolek572 CommunityAmbassador in reply to dailygrump40]

We're in good hands!

[Ammy0508]

Absolutely.