Ocrevus questions

Discuss Ocrelizumab, a monoclonal antibody treatment for MS.

Ocrevus questions

Postby HUD45 » Wed Apr 26, 2017 7:28 am

Hi. I am still wondering if there are patients out there starting the Ocrevus infusion process? From insurance authorization to infusion and side effects, I am looking for testimonials....How is it going? Is it helping?

Gotta be some experiences out there, love to hear about them.....

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Re: Ocrevus questions

Postby jaredboy » Fri May 12, 2017 3:52 am

I'm going to bump this thread instead of starting my own as I have the same question.
I was given the choice of Ocrevus or Lemtrada.
Both have risky side effects it seems, can anyone out there share their experience thus far taking either one of these?
My mom ran into a lady at the market recently who is on Ocrevus, I am planning to meet and talk with her. I'll share anything I learn in the meanwhile.

Thanks!
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Re: Ocrevus questions

Postby NHE » Fri May 12, 2017 5:38 am

jaredboy wrote:I'm going to bump this thread instead of starting my own as I have the same question.
I was given the choice of Ocrevus or Lemtrada.
Both have risky side effects it seems, can anyone out there share their experience thus far taking either one of these?
My mom ran into a lady at the market recently who is on Ocrevus, I am planning to meet and talk with her. I'll share anything I learn in the meanwhile.


Hi Jared,
I recently posted a link to the Ocrevus Prescribing Information. ocrevus-ocrelizumab-f58/topic29056.html

That might be helpful for you.
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Re: Ocrevus questions

Postby jaredboy » Fri May 12, 2017 6:13 am

Thank you very much, there's a lot of good info in there.
As mentioned I am leaning towards Ocrevus at the advice of my Neuro (versus Lemtrada, she gave me a choice and said do some research)
However I am still going to speak to someone my mother met at the market who is on Ocrevus now.
I don't know if the community here will like to hear my experience of opinion, but I'll be glad to share it.
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Re: Ocrevus questions

Postby HUD45 » Wed Jun 07, 2017 7:45 am

Thanks NHE for the prescribing info....pretty much sums it up, trial and error, just like a lab rat. Just hope it works. I will be consulting with my neuro soon and making a decision.... Just have not seen many testimonials.

As a PPMSer, I just don't see many other options that I already have not tried.

Best, HUD
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Re: Ocrevus questions

Postby JCB » Mon Aug 07, 2017 3:03 pm

Has any one recently been on this new drug, and how are you doing? I am PPMS, my doctor would like me to start, I am cautious, thoughts?
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Re: Ocrevus questions

Postby HUD45 » Wed Aug 30, 2017 7:08 am

Hello again...

I had my first 300 mg infusion of Ocrevus last Thursday. It went pretty well, about 5 hours or so. No obvious side effects. I have been fatigued since though, not sure if related to the infusion. Next week I will get the second 300mg infusion and then see how it goes. It took almost two months for insurance approval but the Genentech assistance program takes care of the balance. In all, it will cost me 25$ for each infusion. I sure hope it helps.

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Re: Ocrevus questions

Postby Loca » Wed Sep 13, 2017 10:06 am

My neurologist started the paperwork to see if my Medicare Advantage insurance will pay for Ocrevus. She is excited about Ocrevus; I am split between hopeful and skeptical as I have PPMS. Anyone here with infusion experience? I'm willing to give this a try if insurance will step up.
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Re: Ocrevus questions

Postby MSKarateka » Tue Sep 19, 2017 12:10 pm

I have yet to start the infusion process. My insurance company called me with the approval. I never had to call them. I also have Genentech co-pay assistance.
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Re: Ocrevus questions

Postby HUD45 » Fri Sep 22, 2017 7:16 am

I had my second Ocrevus infusion a couple weeks ago.....No side effects, no benefit yet either.....Time will tell

Genentech was very easy to work with. They called me and set up the assistance program over the phone.

I hope it helps and soon!

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Re: Ocrevus questions

Postby cam » Sun Sep 24, 2017 6:45 pm

Well I thought I'd put in my 2 cents...I was in the initial study group in Canada and got my first infusion in 2013. Have to say it's been great, no new relapses, no progression - MRI shows no new lesions and even some "shrinking" of older ones. I am now continuing in the post study as "knock on wood" I have done well.
As I was in the study group I am not paying for the drug at this time - not sure if that will change now that the drug has been approved, but will see how it goes and deal with it when/if it come up.
The infusions go well, I think I start to get more lethargic as I near the next infusion time - maybe in my head? Call it my "go go juice" - I really feel wonderful afterwards - maybe from the steroid? or extra IV fluids/hydration?
All the others I have met in the group are also doing well and would not change meds. I know there are risks and that is always in the back of my mind, however I am happy that I got the chance to be the guinea pig for this drug and hope it can help others who would really benefit.
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Re: Ocrevus questions

Postby HUD45 » Tue Sep 26, 2017 6:53 am

Thanks Cam,

Glad that it is definitely helping.....a great testimonial....Can you tell us what type of ms you have and are the others in the group the same?

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Re: Ocrevus questions

Postby judymax » Fri Sep 29, 2017 1:17 pm

I had my first Ocrevus infusion on Wed. and it went well with no problems. Felt great on Thursday so played 9 holes of golf but when finished my legs were weak and shaky. Am I supposed to take it easy for a few days after infusion?
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Re: Ocrevus questions

Postby judymax » Fri Sep 29, 2017 3:23 pm

I had my first infusion two days ago and it went well. My insurance wasn't any problem.
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Re: Ocrevus questions

Postby nyc79 » Tue Oct 03, 2017 8:03 am

Just had my second 300 dose test (first one two weeks ago). Copay was $35 and insurance approved before first dose. I'm actually looking for an online support group for people on this drug so suggestions appreciated! Only diagnosed a year ago so scared and lots to learn. It would be helpful to get btdt stories and also on this treatment! For example I wanted to know before the first dose how long I should realistically take off work. First time I went back the next day based on dr advice but now I know better! Would also be good to hear a broader group sharing their experiences on reactions etc. my dr has only infused 20 patients so far so that is a very small sample size. We are all guinea pigs so would be nice to have a group where we can share and learn.
If anyone knows a good group please let me know!
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