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Thread: Ocrevus (ocrelizumab) has FDA approval

  1. #31
    Community Member Jen's Solitude's Avatar
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    Hi Everyone, I must apologize for the delayed response. I guess I am still recovering from the fatigue that the Ampryra caused because I totally forgot I posted here. Good Grief! I have been sleeping a lot so I feel like I am a little more on top of things now. Amazing what 2 weeks of the wrong medication can do to a body.

    Anyway, Ssusan I didn't know you were dx as secondary progressive and I do hope your 3-day infusion makes a difference. I was totally spleasantly shocked by how many problems cleared up for me after my last major relapse in June 2015. I had both solu-medrol and prednisone and by the time I was through I was free of some long standing problems I thought would be with me for the duration. I hope the same thing happens for you.

    Agate and Howie we sure go back quite aways don't we. I remember when I was bait and tackle. I changed it after I found out many thought I was a guy! LOL I remember the change to bntgal was suggested by a member whose name escapes me now. I loved her suggestion and adopted the name change quickly.

    Back to Ocrevus . . Here in Delaware there was an announcement from Lester Holt that I saw along with the $65,000 price tag. Curt saw a different announcement that truly upset him because he said one of the side effects is blindness. I haven't heard or read about that. I told him I would be thoroughly researching it and we wouldn't agree to the drug if we decided there were too many risks. He is understandably nervous about this infusion since I suffered so much with the Ampyra.

    Laz, I read what you posted and appreciate it so much, thank you. I surely appreciate knowing as much as possible in advance of my next meeting with my neuro next month. He is a very skilled and compassionate man who doesn't mind questions. I am totally comfortable with either telling him I will try it or reject it. I am not that crazy with being the first to take it. A part of me wants to wait and find out about any other adverse reactions or problems. Another part of me wants to start something that might help me with my fatigue and walking. So I will just keep researching and decide when the time comes.

    Okay I am going to read some more now, thanks Agate for the post. Thanks everyone for your supportive words!
    DAR
    R/R 1993
    So never be anxious about the next day, for the next day will have its own anxieties. Each day has enough of its own troubles. (Matthew 6:34)

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  3. #32
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    I sure understand wanting to wait a bit to see side effects once Ocrevus is on the market a while, if possible.

    I have been on IVIG for about 9 months now and it has eliminated the MS fatigue which is huge. I wonder if you can use it along with a DMD? It doesn't stop progression, treats symptoms.

    How strange that you cannot get the steroid treatment on a weekend. You would think that between the steroid treatment and chemotherapy for cancer, that there would be enough business to make it worth while staffing an infusion center seven days per week.

    Laz I did not realize how many medications you have tried for multiple sclerosis. You are amazing. You really take charge of your disease and do what you have to do to keep on living with multiple sclerosis . You are much braver than I am, for sure. I am so scared of the multiple sclerosis medications, maybe because of that horrible problem I had with Avanak's. Another person in my shoes might be less scared and more willing to try one of the disease modifying drugs. I don't know.

    In reading this thread, I found myself feeling so good about the little community that we have here. People are so supportive and knowledgeable. And so many of us have been posting back-and-forth for a long time.

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  5. #33
    Distinguished Community Member agate's Avatar
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    Quote Originally Posted by Jen's Solitude View Post
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    ...

    Back to Ocrevus . . Here in Delaware there was an announcement from Lester Holt that I saw along with the $65,000 price tag. Curt saw a different announcement that truly upset him because he said one of the side effects is blindness. I haven't heard or read about that. I told him I would be thoroughly researching it and we wouldn't agree to the drug if we decided there were too many risks. He is understandably nervous about this infusion since I suffered so much with the Ampyra....
    I wonder where Curt saw the article mentioning blindness as a possible side effect of Ocrevus? I've looked into this a bit and can't find it mentioned anywhere though I looked at the Prescribing Information on the Ocrevus Website and several other Websites. There are adverse events mentioned, and most drugs have quite a long list of possible adverse events, but many of them are really rare.

    I didn't find any adverse events involving the eyes or blindness in connection with Ocrevus. But a person should always be careful with any new drug, IMO. It may be on the market and available, but there may be unknown dangers that will turn up as time passes.
    I have tried to know absolutely nothing about a great many things, and I have succeeded fairly well.
    --Robert Benchley

    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

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  7. #34
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    I have been on IVIG for about 9 months now and it has eliminated the MS fatigue which is huge. I wonder if you can use it along with a DMD? It doesn't stop progression, treats symptoms.********

    Bbs,

    That's exactly me experience with IVIg. Fatigue gone and energy allowed me to move in ways that helped other weakened muscles.

    About all the meds I have tried... about a year after I was diagnosed the first DMD came on the market. That was Betaseron. At first there was not enough to give everyone so they held a national lottery. I won! So, I started on betaseron many months before it was fully on the market. It was the only lottery I ever won!

    Over the years I went from betaseron to avonex to copaxone to Novantrone to IVIg to rituxan. I also tried methotrexate for a year. I did steroids for four years. . By the way, I did lots of meds while doing the IVIg. Best of luck to you. I think we are both very hungry to keep up our level of activity.
    Last edited by Lazarus; 04-11-2017 at 03:09 AM.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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    Wow Linda, you've been all over the map with these drugs. I thought you had to stay on ONE particular one for it to work, or maybe you changed because they were not working for you. I just hope you will be able to keep on the rituxan because it seems to be working so well for you.
    Virginia

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  11. #36
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    Quote Originally Posted by Virginia View Post
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    Wow Linda, you've been all over the map with these drugs. I thought you had to stay on ONE particular one for it to work, or maybe you changed because they were not working for you. I just hope you will be able to keep on the rituxan because it seems to be working so well for you.
    I have been dealing with MS for 30 years. Ms drugs often stop working after periods in which they alleviate symptoms. I was on betaseron for 8 years avonex for a year, copaxone for 4 years. I did IVIg for 8 years and several of them I did with copaxone. Novantrone for 2, and rituxan for maybe 4 years now. A bout wth melanoma disrupted ms treatment for a year.

    When first diagnosed there was only betaseron. Then avonex then copaxone. Doctors were making decisions about switching me based on the rapidity of progression. I think I left something out but I am so pleased that my neuro has taken my life goals seriously.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  13. #37
    Distinguished Community Member agate's Avatar
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    You have MS long enough and you can go through quite a few drugs and still give each of them a thorough try. Sounds as if you didn't give up on any of them too soon, Linda.

    I do recall hearing that with Copaxone you needed to be on it a while (9 months to a year) before you could expect it to be helping you but I'm not sure where that advice came from.

    You've really tried quite a few options. Which was the easiest on you, do you think--the easiest to take and with the least obnoxious side effects?
    I have tried to know absolutely nothing about a great many things, and I have succeeded fairly well.
    --Robert Benchley

    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

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  15. #38
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    Hi Agate,
    BAsically, I do not have negative reactions to the meds I have taken. Maybe a site reaction here and there, serious headache which is eliminated with premed at infusion times. Tremendous benefits from prednisolone, IVIg, Novantrone and rituxan.
    Who knows about the ABC's but that was all there was. Vollmer switched me to copaxone and IVIg because of the cancer. Years later I went on Novantrone which Vollmer also suggested but ruled out until I was cancer free for a period of time.

    I have lots of ms symptoms but the meds I take give me enough to keep going. Like all of us I feel the twists and pinches of symptoms wrapping my body tighter and tighter but I am still crawling around and for that I am grateful.
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  17. #39
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    Default This is great! 50 minute talk by Vollmer on Ocrelizumab and comparison with other dru

    DR. VOllmer is a major MS researcher. There is great information in this presentation. About 20 minutes in he does Q&A which was also great. I am so happy to have found this...I noticed how interchangeably he uses rituximab and ocrelizumab. I am JC+ and the explanation of risk was also welcome information.

    https://m.youtube.com/watch?v=J4prsO-FDzs
    Linda~~~~

    Be the kind of woman that when your feet hit the floor each morning the devil says:"Oh Crap, She's up!"

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  19. #40
    Distinguished Community Member agate's Avatar
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    I've often seen Dr. Vollmer's name as an author on MS research studies, and I was interested in what he had to say.

    There's a lot of information packed into his talk and it may be easy to miss this but he actually says that the FDA has approved Ocrevus (ocrelizumab) for all forms of MS, including SPMS. I've never heard that about any of the MS drugs before, except for a few statements about Betaseron as being the only MS drug that had been tested on people with SPMS.

    It also sounds as if people will be inclined to switch from Tysabri to Ocrevus because of the lower cost, reduced PML risk (almost no PML risk, according to Dr. Vollmer), and the less frequent infusions (once every 6 months for Ocrevus versus once a month for Tysabri).

    He even suggests that the drug companies might urge some people currently on the older MS drugs (the interferons and Copaxone) to switch to Ocrevus because of the cost difference and better effectiveness.

    Moreover, he states that it is expected that Medicare/Medicaid will cover the cost of Ocrevus since it's been covering Rituxan fully. With patient assistance programs, he says that the patient would pay only $20/year for Ocrevus.

    Linda, I did notice how he almost equates Rituxan with Ocrevus. At one point he mentions that "rituximab is basically the same thing."

    Towards the end of the talk he explains that ocrelizumab is just slightly different from rituximab and says that rituximab didn't get FDA approval because the company realized that they would lose their patent protection on rituximab before they could get to market with it as an MS drug, and so they generated a new molecule called ocrelizumab.

    So this drug is indeed just a slightly modified version of rituximab, as someone already mentioned here recently.
    I have tried to know absolutely nothing about a great many things, and I have succeeded fairly well.
    --Robert Benchley

    MS diagnosed 1980. Avonex 2002-2005. Copaxone 6/07-5/15/10. Member of MS forum here since 2001.

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