Ocrevus-where are you??

[Juleigh21]

I received my 2 half doses of ocrevus in July and August. I was due for my first full dose yesterday. I didn’t receive it because it was day four in the hospital. A month ago I started a relapse and it was discovered by an MRI that I have a new lesion growing in my thoracic. I did three doses of 1000 mg of Solu-Medrol a couple weeks ago. Since then, I developed an infection in my abdomen. My new date for O is scheduled for next Thursday. I’m not sure Ocrevus is for me. I felt good on it in the beginning. I’m wondering How I will be feeling the end of June?? My doctor doesn’t want to change it at this time, he wants to see how I do with the first full dose. I’ll admit that I’m scared. Has anyone else experienced anything like this?

[Kenu]

Those who respond will you please state your age. Ken 🐾🐾👍

[Juleigh21 in reply to Kenu]

56

[greaterexp]

I'm not on Ocrevus, but I'm sorry about all you're going through. I hope and pray you'll be on the mend quickly.

[88Dodgee]

I am 51 diagnosed ppms in early 2017. I have had 5 ocrevus infusions. my first full dose in feb 2018 knocked me down for 3 days but since, after each full dose i take a steroid step down for 5 days and have not had any bad reactions. mris in 2019 did not show any new lesions and i hope that ocrevus will continue to slow the progression. I wish you the best.

[twooldcrows]

i am 67 and have been on it since nov.of 2017....have not had any problems ....if the doctor doesn't think what happened was due to the infusion i personally would go on to the full infusion...good luck for no new problems ..i do personally have loved being on it ...be safe...sorry you were sick ...love and much happiness in this world having this disease ...

[carolek572 CommunityAmbassador]

I am 57 and I have been on Ocrevus since Feb 2018. I haven't had any negative reactions other than redness, flushing, and itchiness right after the infusions. My next infusion is scheduled for the end of February. Keep Smiling, Juleigh21

[Raingrrl]

I’m sorry you are going through this Juleigh21 . I haven’t experienced anything like it on Ocrevus. I just had my 4th full dose in Dec. The only negative I’ve had is that after an infusion I get a bad headache that lasts a day or so.

[mm1527mm]

I am sorry to hear this. I have only had my first two half doses in September and go for my mri in march prior to my first full dose. Prayers to you.

[Iona60]

My neurologist had said that Ocrevus doesn't show any positive results until after the first full dose. It would make sense that there may be some disease progression before that. Hopefully, you will begin to experience positive results soon!

[Juleigh21 in reply to Iona60]

My doctor wasn’t happy that I have a new lesion forming but he’s hopeful that the first full dose changes things around. I’ve read that it can take 2 full years for ocrevus to totally work. I sure hope it works before then!!!

[Iona60 in reply to Juleigh21]

I think that it started working at the 1 year point for me, after my 2nd full dose. Everyone must be different.

[jkdavid99]

I am 48 and have had 3 full doses. I love ocrevus. Saw Neurologist today and he looked at my last MRI from November. No new lesions and no active ones. I am definitely walking better. I feel really good. He told me that since i have been dizzy for months that probably will not go away. The first full dose i was super tired for 5 days and only felt like there was something stuck in my throat for a week but i was able to eat and swallow. At the full dose when the drip gets to 200 i feel a little pressure in my chest but i think thats in my head.

Good luck to you

[rjoneslaw]

I just had my 1st full dose Monday Jan 20 2020. I had no problems

Kenu I will be a 1/2 a century in June the big 50

I will be the part of the only group/ generation (anyone born in the 70’s) who has lived through 4 complete decades

[erash]

I’m on O. 3rd full dose Feb 14th. Amazing results initially. Now can feel my MS slowly progressing again. 🤞next dose will be magic again.

So sorry for what u r experiencing Juleigh21

[kandykone1 in reply to erash]

Why do you think it’s progressing?

[erash in reply to kandykone1]

I have spms or Ppms (they’re not sure) and Ocrevus slows progression but no guarantees it stops it. I am having more right sided weakness...but I’m working hard at strengthening, mobility, endurance, nutrion and stress management

[ahrogers]

I am 52 and have been on Ocrevus since 2016. I have not had any new lesions yet.

You could continue on Ocrevus for this next infusion and if you have another relapse before the following infusion in 6 months then I would say it isn't working.

When I relapsed on Rebif a little less than a year after starting my neuro offered to keep me on it. Ocrevus wasn't approved at that time.

I hope you get better soon!!

[Goldilockssearching]

43 @Kenu

After my half doses oct/Nov ‘17 (three months later I had a MRI) I too had a new lesion on my thoracic and a suspected second lesion that they were unsure of. My doctor still scheduled my first full dose on sch May ‘18 telling me that she thinks the lesion developed while I was waiting for insurance approval of my half doses Aug-Oct ‘ 17 and not to worry about it. I have not had a new lesion sincee and my ms is considered non active.

[Juliew19673]

Hi Juleigh - I'm 54 and have PPMS. I've had 3 Full doses of Ocrevus and it's very slow but it's starting to finally show improvements and no new lesions.

[Tazmanian]

I'm 58 I have been on O since 2018. First full dose dec. 2018.

[Cutefreckles72]

I am 47 and I have PPMS. Last year, I had my 2 half doses of Ocrevus in October. I didn't have any side effects. My first full infusion will be in May 2020. Hoping and praying you will get better. Hang in there. 👍

[CraigS]

So, I had to postpone my infusion from Dec. to mid Jan. In that time, it seemed as though my balance, ability to walk and stamina for standing had deteriorated pretty severely. I used to say that I didn’t know whether Ocrevus was working at all.

Maybe I know now, but it’s weird.

I’ve had about six doses twice a year. It takes about 5-6 hours per sitting. The last two times I did it, I’ve broken out in hives after they kick up the dose after a couple of hours. Other than that, no real bad side effects, except the staying up for a couple of days afterward.

Anyway, what was the question?

[kdali]

No, but I’ve read that failing a drug is two relapses. I hope you do well with the full dose!