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    Some questions

    Hi everyone,

    I am going to start the new drug Ocrevus I am kinda nervous about starting it because my body does not like drugs. So I was questioning I some of you can tell me some positive about this drug and some negative about this drug. THANK YOU FOR YOUR COMMENTS

    #2
    Originally posted by diguilio View Post
    Hi everyone,

    I am going to start the new drug Ocrevus I am kinda nervous about starting it because my body does not like drugs. So I was questioning I some of you can tell me some positive about this drug and some negative about this drug. THANK YOU FOR YOUR COMMENTS
    I'm not on Ocrevus, but I thought you might find this webinar helpful. It is chockfull of helpful information. The Q & A is especially good.

    https://www.youtube.com/watch?v=J4prsO-FDzs

    Also, I did read recently that because of the Ocrevus's mission to kill B cells, neurologists are recommending patients stop the drug no later than age 55. This is because the immune system weakens as we age and having fewer B cells would not be a good thing to prevent future infections.

    Good luck.

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      #3
      I started Ocrevus a month before my 55th birthday and have been in a clinical trial for 2 years. It is the first DMT that has stopped the relapses and lesions (had been on Copaxone and Gilenya). I am now hoping to transition to private insurance and continue the drug. My fear is that the 55 age limit is because most trials won´t admit patients older than 55. My fear of new lesions outweighs my hesitations of staying on treatment. I am possibly able to extend the doses due to have zero B cell count when the 6 month infusion window comes round again. The neuro thinks I could go out to 9 months. I have not gotten a cold, flu or respiratory infection.

      The positive: no new lesions or relapses for over two years.
      don´t have to think about taking a daily DMT though I take supplements
      after the first two half doses a weird numb patch on my thigh cleared up after having been there for years and it has remained normal since

      The negative: after the full doses I have 2-3 days of migraines and nausea.
      I have gotten two cold sores and my very first plantar wart- the wart I am still trying to kill after 8+ months.

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        #4
        Interesting. I’ve the same thing happened to me. Planters wart came a few days after the infusion and still 8 months later still there. They must thrive on no B cells ? Nothing seems to faze it. I’m not liking that much. Going to have to go see a specialist. Three different over the counter treatments and I’ve use all of them all up. Crazy.
        It was one agains't 2.5million toughest one we ever fought.

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          #5
          Hello diguilio,

          I will be taking my 3rd full dose next month. I just had a Mri and no new lesions. I haven't had a relapse. I've had a lot of uti's but I don't believe cause was Ocrevus.

          The infusions all went well.

          I hope it works well for you.
          God Bless Us All

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