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  • Jade Divine
    replied
    Thinking about Ocrevus

    I am thinking of starting Ocrevus soon. My only concern is the side effect of malignancies. Am I overreacting?

    Leave a comment:


  • lisa2007
    replied
    Originally posted by DonnaH View Post
    Iím ppms and will start orcevus on Monday. Can you tell me why your not a fan, I think I understand you did testing.? With O or just pre labs.
    i NEED to hear that someone somewhere has exp and has had positive outcome.

    Everyone talks about how the infusions went, thatís great but I need to know how it affected afterwards. Is it worth it? Is the slide slowing down. Because if Iím not gonna get a break what is the point? I already know Iím on a downhill ride I am just hoping this will slow it down just a little bit would be nice.
    So I have been on Ocrevus for a year, just had my third infusion (counting the first two half-doses as one). No relapses. I feel fine. MRI came back great, no new or expanding lesions. Like all DMTs, itís not a cure and I know I wonít get better, but Iím not getting worse!

    Leave a comment:


  • DonnaH
    replied
    Re:2009ms

    Iím ppms and will start orcevus on Monday. Can you tell me why your not a fan, I think I understand you did testing.? With O or just pre labs.
    i NEED to hear that someone somewhere has exp and has had positive outcome.

    Everyone talks about how the infusions went, thatís great but I need to know how it affected afterwards. Is it worth it? Is the slide slowing down. Because if Iím not gonna get a break what is the point? I already know Iím on a downhill ride I am just hoping this will slow it down just a little bit would be nice.



    Originally posted by 2009ms View Post
    Hello,

    Ihave had MS since 2009 and have been drug free so far. I just do not want to put foreign chemicals in my body.

    I did did do the testing for Orcevus, not sure if I am going to go on board or jump ship.

    Let me me know how w it goes!!

    Leave a comment:


  • diana49221
    replied
    Insurance.......

    Neuro says I have been approved thru my insurance..but they have only done a couple infusions..they are waiting on payment so they know what to tell patients regarding what copay will be...I'd infuse worry about payment later. I know Ocrevus has assistance. Hopefully it will be sooner than later for me!! Best to all😊

    Leave a comment:


  • diana49221
    replied
    Signed up for Ocrevus

    I have been on Tecfidera for 4 years, Ty for 7 years. Recently had bad flare. Been very stable for over 10 years.
    Neuro switching me to Ocrevus. I signed up on 6/14/17. Ocrevus called on 7/6/17. Gave me my ID #.
    What now?? Do I call my insurance or does my Neuro handle it from here. Neuro has own infusion center. I have Blue Cross/Blue Shield Medicare PLUS Blue PPO.
    Any Info/reply would be appreciated. Thanks, Diana

    Leave a comment:


  • AmyForever
    replied
    I am interested in knowing too, Hope it will work out as i would be on Ocrevus soon

    Leave a comment:


  • Carolinemf
    replied
    Hi T,Yes I remind myself of the old neighbour from my childhood who we used to tease by coughing or sneezing just to see how quick they would end the visit if anyone seemed ill. I'm on Tysabri and not as immuno suppressed as i would be on Ocrevus but that sense of 'keep away' is definitely there because i know i get sicker now and it lasts longer. And i have enough to deal with without 'bugs' making things worse.If there is some one i genuinely don't want to be around (in any circumstance) I usually plead a headache and the need to get a panadol for it -to excuse myself.No ones sensibilities are offended then and any odd behaviour perceived on my part is put down to the headache. All us aspiring hypochondriacs hold our head up and soldier on.

    Leave a comment:


  • Temagami
    replied
    The steroid dose is way less than the dosage for a relapse - maybe 100mg? I am now almost 4 weeks out from the 2nd half of infusion no. 1 and have not had side effects. I still have recurring sx that have been around from before. While I donīt feel better, I donīt feel worse and have not had a relapse in 2017.

    Over the weekend I was in public and introduced to someone with a crusty cold sore. Ahhh- knowing that Ocrevus makes me vulnerable I had that moment of panic in which I did not want to shake her hand. Kept my hands in my pockets and smiled with a greeting. I donīt like the awkwardness of that moment where societal expectations confront self-preservation. How do others deal with immune compromised states and others who are sniffling, coughing, sneezing or cold sore ravaged?

    Leave a comment:


  • pballer76
    replied
    Blood labs

    Well I got my three hepatitis B blood labs back, all negative. Just waiting for the insurance, infusion center and drug delivery to get worked out.

    Leave a comment:


  • hunterd
    replied
    Count me as one of the interested too. I will be especially interested in the IV steroids, since I cannot take steroids because of my diabetes.

    Leave a comment:


  • REG53
    replied
    Hi pballer, Hopefully I will be starting soon also. I am going next wk to have my blood tested and I'm waiting to hear from ins. Yes, guinea pigs we will be. S-C-A-R-Y

    I wish you all the best.
    Keep us posted.

    Leave a comment:


  • pballer76
    replied
    Ocrevus infusion length

    The first two infusions are one or two weeks apart and they are 300mg.
    After that it is one infusion of 600mg every six months.

    The book (propaganda) I was given lists the first two infusions (300 mg) last 2.5 hours then the following (600 mg) last 3.5 hours.

    It does mention a one hour observation after the infusion.

    Leave a comment:


  • kmallory1
    replied
    I'm really interested, too. I've tried to read up on the protocol, how long the infusion takes and what the preparations are.

    The recommendation I've seen is pre-treating with IV steroids and an antihistamine and observation for an hour after the infusion, which lasts 2 1/2 to 3 hours. Sounds like an all-day process.

    Leave a comment:


  • oceanpride
    replied
    Thank you for posting pballer. I'm very interested in hearing from patients who are going to do this. I hope that if it's not too much trouble, that you let us know how it's going, good or bad or what ever. I'm cheering for you.

    Leave a comment:


  • 2009ms
    replied
    Thinking about Orcevus

    Hello,

    Ihave had MS since 2009 and have been drug free so far. I just do not want to put foreign chemicals in my body.

    I did did do the testing for Orcevus, not sure if I am going to go on board or jump ship.

    Let me me know how w it goes!!

    Leave a comment:

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