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Thread: Undecided

  1. #1

    Default Undecided

    Iíve had Ms since Ď03. I had been taking Cellcept since 07 but it stopped helping so I stopped it in October. Because of past allergic reactions Iím terrified of trying a new med (had ocrevus in mind) although I donít know if Iím a candidate for it because of having hepatitis as a teen.
    Iím told Iím no longer relapse remitting but have secondary Ms. The two obvious symptoms now are my legs completely giving out and my bladder control is more of an issue.
    I wanted to ask yíall if you were in my position the following 2 questions 1)would you begin Cellcept again (my thoughts are was I built up a tolerance or 2) physical therapy for my legs?Does physical therapy have the capacity to regain leg strength?
    Although I have a neurologist appointment soon I like to have in mind a course of action I can discuss as well as what his thoughts are.
    Thank you all for taking the time to read this. Any opinions are greatly appreciated

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  3. #2
    Distinguished Community Member agate's Avatar
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    Welcome back, petpuppy! Nice to hear from you.

    I was wondering about the Cellcept and found that it is sometimes prescribed off-label for MS though it can have some serious side effects:

    https://www.nationalmssociety.org/Tr...r-MS-off-label

    That article states that you can take Cellcept with some of the other MS drugs though it isn't clear whether you could take it along with Ocrevus:

    CellCept has been studied as a monotherapy (use of a single drug to treat a disease or condition) and also in combination with other DMTs such as interferon-beta medications.
    You're a candidate for Ocrevus even if you have SPMS so long as you're still having relapses as I understand it.

    About the hepatitis question, maybe someone more knowledgeable than I am can answer it better but I found this on the Ocrevus Webpage:

    Do not receive OCREVUS if you have an active hepatitis B virus (HBV) infection.
    If the hepatitis was treated so that you're no longer showing signs of it, you could probably take Ocrevus, but you should ask the doctor who would prescribe it.

    Physical therapy is almost always a good idea provided you have found a competent physical therapist. PT has helped to strengthen my legs. They look less saggy than they did a few years ago and they give out less easily. I've been through several courses of PT in the last 15 years and all but one of them have been good experiences. The one that wasn't so good was adequate--just not as helpful as the others. But you do have to take their instructions seriously and follow them. When they say to do 20 of a certain type of exercise at home a couple of times a day, you need to do that--and make sure you're doing it right even if you have to run through it quite a few times under their supervision. They should be making sure that you're getting your form right because it matters.

    Keeping up with the routines they assign you can be boring, and it's a task I tend to forget about till the end of the day, but I always make sure I do them. It's pretty clear to me that with MS we're not active enough, and we have to force ourselves to move around more. That's where PT comes in very handy.
    MS, diagnosed 1980. Avonex 2001-2004. Copaxone 2006-2009.

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  5. #3
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    Yes to Physical Therapy - early and often!

    I do recommend an MS therapy but leave that to a discussion with your doctor.

    This all sounds very hopeful. Best of luck!
    ANN
    There comes a time when silence is betrayal.- MLK

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  7. #4
    Distinguished Community Member Sunshine's Avatar
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    Yes to PTó it def helped me. You can also get in at home if necessary.

    I donít know enough about Cellcept...Ocrevus and Rituxan are worth asking about though.

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  9. #5
    Distinguished Community Member Lazarus's Avatar
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    Quote Originally Posted by Sunshine View Post
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    Yes to PT— it def helped me. You can also get in at home if necessary.

    I don’t know enough about Cellcept...Ocrevus and Rituxan are worth asking about though.
    Ocrevus/rituxan have very few side effects and for me rituxan has none at all. It has been a wonderful drug fo me and helps keep me farming!
    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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