First infusion done today

[PositiveMS]

So as soon as Ocrevus got approved in Canada, I decided I wanted to give it a try. I've been just fine on Tecfidera for the past 4 years, but I wanted try something new. Tecfidera was great for keeping things stable for me. At the same time I did have small relapses and disease activity here and there, especially in the hot and humid summer months. So after a long process with my clinic, my insurance and Roche, the Ocrevus manufacturer, I got the drug funded.

I went in today for the first infusion. They gave me a small amount of steroids to start, as well as some Tylenol, Gravol and Benadryl. Then the infusion was next, which lasted about 2.5 hours. They started it a slow rate, then upped the infusion rate every half hour until I reached the max of 180.....I forger what that number refers to now, hahaha. I reached the maximum rate and then it was over before I knew it. I stayed an extra hour for observation after. I went in feeling fine and left feeling the exact same. The only strange thing that happened is that I didn't get drowsy at all from the Benadry and the Gravol. The nurse kept telling me that the drowsiness was just around the corner, that it was coming, that I would feel it soon. After about an hour she said, "Well I guess you're not going to get Drowsy!" It was funny.

All in all, very pleased. I go back for part two in two weeks, then just once every six months. I'll keep you guys posted on what's going on in the next two weeks.

[REG53]

That's good your first infusion went well and I hope it works well for you.

[smalltowngirl]

My first ever infusion will be scheduled any day now, so thanks for sharing this. I appreciate knowing what to expect. I’ve never been on a DMT and just recently DX’d. I’ll be starting Ocrevus soon and I’m looking forward to it.

[PositiveMS]

My first ever infusion will be scheduled any day now, so thanks for sharing this. I appreciate knowing what to expect. I’ve never been on a DMT and just recently DX’d. I’ll be starting Ocrevus soon and I’m looking forward to it.

Hi smalltowngirl. I'm glad my post was somewhat helpful to you. That's why I posted. I wanted to maybe help some people that might be feeling anxiety before their first infusion. I was sort of anxious before I went in, and it helped me to read what others had posted. It's now been three days since I went, and everything is still fine. Best of luck!

[PositiveMS]

One week later

Hi folks,

I just thought I update you on my Ocrevus journey.

So it's been a week and a day since my first infusion. My second is set up for this coming Friday. I can't wait to get the second one done. It'll be nice to have it all in me and then just continue with my life and see what it brings.

After my first infusion on Friday, I felt great. I went out for supper with my mother, who had come down to be there with me for the first dose. The next day we went shopping for a few hours. I was not affected by the medication at all. I should mention that I use a cane and have for about 6 years now. The main annoyance with my MS is the spasticity in my legs. My neurologist told me I'm as spastic as he's seen. This doesn't stop me from doing anything as I swim, do yoga, work 40 hours a week and live alone, managing to get everything done "with a little help from my friends".

So yeah, I was off to a great start with Ocrevus. On Sunday night my legs suddenly became beyond stiff. I could barely move them. I was so afraid that I was having a reaction to the Ocrevus! I missed Monday at work, then Tuesday and I stayed in my apartment. I was barely getting around it. I called my MS clinic nurse and he told me that he didn't think it was the Ocrevus doing this to my legs, but that I probably was fighting off a UTI or a cold. He turned out to be right!! I started sneezing a lot halfway through Tuesday and feeling generally "coldy". I've never been so happy to have a cold in my life!

Flash forward to Friday, yesterday, and I was back at work feeling my normal self again. I did notice that I was less stiff yesterday. It's hard to explain it exactly, but I usually have to stand up and stretch my legs every half hour at my desk to keep them feeling good, and I noticed I didn't have to do that as much yesterday. It's something small, but there is another strange thing I noticed, and this one is definitely new. It was hot in the office in the afternoon and I noticed I was sweating a bit. I never break a sweat. I usually just start to overheat and have to turn on my little fan. Yesterday I seemed to tolerate the heat better and just broke a it of a sweat like a normal person. I was very encouraged by this, although I'm not even sure what it means.

Altogether, I feel great this morning. Thanks for reading. I'll write again after dose 2.

Ciao

[oceanpride]

Thanks for posting about your experience. A small gain in this business is a very large one indeed. Hoping you see more improvements. I’m not far from you just in New Brunswick. I think Halifax is the MS place to be maybe here on the east coast. I wanted to see a specialist over there but because I’m out of province they won’t take me. I’m PPMS now clinically 14 years. Still work full time but as a supervisor capacity, not a lot of physical work but some. My legs are super spastic and stiff also and my balance is not good. Can walk unaided but not very fast. I really would be very happy with a few small improvements. And to help keep this monster at bay. They informed me I was too old for the infusion at 58. 55 is cut off. I may go try and pull a few strings and see if they’ll do it compassionately? Thanks again for writing about your Experience. I’m really interested in this.

[PositiveMS]

Hey there oceanpride. A fellow Maritimer!

Yes, you are right that Halifax is a good place to be if you have MS. I go to the Dalhousie Multiple Sclerosis Research Unit for all my appointments, but there are other neurologist and MS specialty places here. If you want to get in on trial drugs, it's the place to be.

So they told you you were too old for Ocrevus?? I've never heard that there was an age restriction. I thought there were age restrictions just for certain studies, but not in general. I'm surprised to hear this. I waited for Ocrevus since it came out in Canada in August. I finally just got to start at the beginning of March.

It was a long process because my insurance company was the last to jump on board. Every other insurance company picked up Ocrevus almost right away. That was very frustrating. In fact, they STILL don't cover it, but I got to start the medication because the company that makes it, Roche, has a program called the "Compass" program here in Canada. They talk to my doctors and to the insurance company and try to get people coverage. In the end, Roche decided to give me the medication for free until my insurance decides to pay it. I'm sure they reached an agreement together, but all I need to know is that finally it is covered. Have you dealt with Roche yet? It might benefit you.

Anyways, all the best and I hope you get to try it sometime!

[PositiveMS]

Small update:

Yesterday at work, a colleague of mine that sits at the front desk and who sees me come and go all day, said to me out of the blue, "Your walking seem so much more steady these days." He had no idea that I've switched to Ocrevus. That certainly put a smile on my face.

[smalltowngirl]

That's awesome! I bet it did! So happy and encouraged to hear your updates. I get my first infusion next Friday morning.

[pb909]

Great news.

I would call this a BIG update!!

[REG53]

That's great news.

[oceanpride]

Yes Wow. I’ll bet that made your day. I don’t know about you but I’m really self conscious about the way I walk. Especially if I know people are watching. I’m thinking you might have had your second dose today? Good luck. Thanks for posting

Richard.

[PositiveMS]

Hi guys,

I did my second infusion yesterday, and I'm happy to report that it was completely uneventful. It's already become "usual". The first time I went I was hyper aware of everything going on, just because it was the great unknown. Just like the first time, I took a huge cocktail of Tylenol, Benadryl and gravol and IV steroid, and just like last time I didn't feel any effects at all. I'm glad all that stuff doesn't put me to sleep. The nice lady next to me was getting a Rituximab infusion, which has all the same premeds, and she was just as awake as I was. The nurses had fun joking about how we are not human.

I learned one interesting thing about the steroids while I was there. One of the nurses explained that the small amount of steroids they use before the infusion are enough to last two days in me. She said this can cause the "superman syndrome", which basically makes you feel like you have more energy for a few days, then you may crash a little bit after two days. I had an "OOOOOOOOOHH" moment. That totally explains what happened to me last time. I went shopping the day after for about three hours, went out to supper, went out Sunday for dinner and I felt like i could take on the world. Monday morning I missed work because suddenly my legs were super stiff and I slept a lot that day. Well, I learned my lesson, haha.

Smalltown girl: I hope your first infusion goes very well! Let us know when you get it done if you want. The nurses at my infusion clinic have only had a handful of Ocrevus patients so far, but they say it is very well tolerated. They haven't seen any reactions at all.

Reg53...thanks! I'm pretty excited.

Oceanpride: To answer your question, yes, I used to be self conscious about my walking. I use a cane and I can't get my legs to always do what I want. I have been using a cane for a while now, so I am 100% used to it and I don't feel self conscious anymore at all. In the beginning, as a 32 year old with a cane, yeah.....I felt like everyone was staring all the time. They probably weren't, but I felt like they were. Now I couldn't care less, haha. But it took me a while to get here for sure.

[PositiveMS]

One week after 2nd injection

Ok, ok, so it's not quite a week since infusion part two, but almost. It will be a week tomorrow morning, so close enough. So here is where I am at the moment. I feel good overall. And different.

My legs are still spastic, but not as stiff, if that makes any sense at all. I don't need to stretch them every half hour like I used to. It is easier to walk, and at the moment I think that's entirely due to my improvement in steadiness. I don't want to call it improvement in balance, because that was already mostly fine. I used to feel a lot more wobbly. Now I plant my feet with more confidence when I walk. It is the end of a long work day, so I am tired now, but I've noticed all week that I was no longer exhausted at the end of the work day. My brain feels clearer too. These are just little things, but to me they make a big difference. I feel hope again about my MS! I had been mostly stable on Tecfidera, but this feels.......better.

I read someone else's post here about how it's easier to stand up......it's true. When I get up out of my chair now, I feel confident in my legs holding me up, where before I would have one hand grabbing the wall.

Anyways, this is just two weeks since my first infusion, so I hope things continue to improve. I hope other people react well to this drug too!

I'll write again in a few weeks to let you guys know what else is going on.

Cheers!

[oceanpride]

Thank you so much for posting this. This gives me hope. I finally got through to my neurologist office and they are sending me everything to get started. They said that even with my being a few years older they thought I’d be a good candidate for it. No question I sure could use some help. I’m really happy it’s gave you a new lease. Fingers crossed and all the best
Richard.
PS I’m looking here every few hours , the only info I get on this stuff.