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    I am on copaxone -- will try solumedrol monthly for a bit then if no improvement -- she is talking about novantrone.
    Anyone been on it? I have a lot of ???,s Any thougths?

    I took Novantrone, Granny, way back in the early days of this century (I don't remember the year, exactly ). I could only take a couple of infusions as my white cell count took a major dive and I had to have a "rescue" with a shot of Neulasta.

    Too much drama for me! I never went back for the rest of my infusions after that because I was diagnosed with breast cancer during that time and needed to address that first. The cancer is gone now. The stinking MS just won't leave, however.

    What are the doctors telling you about the drug? I don't remember it being that bad. It didn't make me sick, just really, really tired (with blue-tinged urine).
    “The world breaks everyone, and afterward, some are strong at the broken places.” Ernest Hemingway
    Diagnosed 1979


      Hi GrannyPat

      I also had Novantrone. Although no real bad side-effects I was real scared. I think I should have been looking at Tysabri even back then..Maybe could have avoided t he major flare in 09. After Novantrone some more current measures may be out of reach. just say n
      Progressive Relapsing MS


        Originally posted by GrannyPat View Post
        will try solumedrol monthly for a bit then if no improvement -- she is talking about novantrone.
        Hi GrannyPat:
        My response isn't so much about Novantrone, but about your post and what you said and didn't say in leading up to Novantrone.

        Lots of folks are on pulsed steroids -- I was on them myself for years. What stands out from your post isn't the idea of the steroids, it's what you explained as the rationale behind them that got my attention.

        Somewhere there's a disconnect -- either your doctor didn't explain things very well or you misunderstood or a bit of both. You said "if no improvement, then Novantrone." Monthly Solu-Medrol is not expected to really "improve" things. At best, research has shown it can slow progression of MS for a couple of years but then loses its effectiveness.

        You might feel better for awhile while Solu-Medrol is in your system and suppressing inflammation, but it stays in your system only for a few days, then your body goes back to whatever inflammatory pattern it has. And all the while you'll be raising your risk of developing long-term damage from the steroids -- osteoporosis, diabetes, glaucoma and cataracts, to name a few. That's why, in other autoimmune diseases, the goal is to get patients off of steroids and onto a different medication whenever possible.

        Suspicious in its absence is any mention of you trying a different CRAB drug or moving to Gilenya or Tysabri. Novantrone is a drug used when MS is progressing despite use of another drug. At the time it was FDA approved, that meant only the CRAB drugs, and Novantrone was sort of the drug of last resort. Since then, Tysabri and Gilenya have been approved, and they have roughly twice the effectiveness of the CRAB drugs. Moving to Novantrone -- a drug known to cause heart damage after hitting a cumulative dose -- without trying other meds first, or without a really good reason for not trying them first -- leaves a LOT of questions unanswered.

        But most significant of all is that you implied that the Solu-Medrol was supposed to make an "improvement."

        You didn't specify what you mean by "improvement." Again, you might get an improvement for awhile in increasing the time between relapses. But steroids are not expected to make an improvement by means of restoring lost function.

        Pulsed steroids would make sense if you had said that you'll be trying them for awhile as a trade-off for not having to go on a different med with other undesirable side effects -- such as the flu-like side effects and risk of depression of the interferons, the PML risk of Tysabri or the heart damage of Novantrone -- or that other meds haven't been effective and you're going to use them as a means of holding out until other medications become available -- such as Campath (to be called Lemtrada for MS) or BG12. But the idea of "improvement" may be unrealistic. And, in being unrealistic, isn't a great rationale for using steroids instead of just moving to a different drug.

        You may have left a lot of detail out of your post for the sake of brevity. But, again, going from Copaxone to Novantrone without mention of trying other meds, and implying that steroids are expected to cause some kind of unspecified "improvement" leaves too many details unaddressed. My impression is that you should have a very clear understanding of why this approach has been chosen -- which you may have but didn't explain optimally -- before moving forward with it.

        As for Novantrone, I had two doses of it several years ago, and it didn't help me (but I have an anomalous response to IV chemotherapy agents --they make me worse instead of better). With both infusions, I felt like I had been hit and dragged by a truck for about a month afterward. Other posters may have had better experiences with it.


          Hi Granny, I've had this MonSter for 11yrs now. I'm on Rebif & have done very well " Praise God", but about 7yrs ago I had an exaserbation & was not responding well to the Solumedrol so my neuro put me on Novantrone.I have never been so sick in my life,I opened a can of tuna & never even made the bathroom.
          To this day I can't even walk past the fish counter.My neuro even called the company that makes Novantrone,they had never heard of a reaction like mine.
          I pray you do O.K. God Bless Nona Judy


            Thank you everyone. I was rather over whelmed when my dr talked about the risks to the heart, etc......I told her no but that I would think about it. She is using the steroid to help settle the MS down. My eyes are a little better the rest is so so. All of your in put has been so helpful.