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    stalled at .5 - how long?

    I have been stalled at the .5 titration for a long time - I was supposed to be titrated to the full dose this monday, but I am still at .5. My doctor seems perfectly find with this, and I guess I am too - but how long can I stall here?

    I am stalled b/c of my headaches/migraines. They started as soon as I started the beta - so clearly they are from the beta. In fact, I had a migraine so bad last week I missed a whole week of classes which is a really big deal for me. I was in so much pain. I am still in pain. I hate it. Any suggestions, ideas? I premedicate with tylenol PM every single time an hour before hand, and I am allergic to ibuprophen. I cannot take aleve either - it is too closely related to ibuprophen, and my dad and uncle are deathly allergic (I have never tried) - so my doctor said we shouldn't even try.

    Thanks for any advice!
    Sasha - dx January 2011; tysarbi, zanaflex, gabapentin, and baclofen
    ~Life is not about waiting for the storm to pass, it is about learning to dance in the rain.~

    #2
    How are your migraines this week? Do you see any evidence that they are getting less intense/frequent the longer you are at the .5 dose?

    It sounds like your body just needs more time to adjust to the med. [based from what I've gathered from your other posts.] At least you are on the med; I don't think I'd stress too much about being stalled at .5 ml. When your body is ready to move up to .75 you'll know - though I fear that again you'll have a hard time.

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      #3
      If you're certain the migraines are being caused by Betaseron, the question isn't how long you're going to be stalled at .5. The question is why you're still taking it at all. It's one thing to muddle through some temporary, uncomfortable side effects, as many of us have. It's another thing to become incapacitated by side effects that are worse than the effects of the disease, with no end in sight.

      My first instinct is to ask what supports your belief -- if you have one -- that your migraines will get better if you just stick it out a bit longer. Except, you wouldn't be asking "how long" if you had any idea, or any realistic expectation that the migraines will end if you just take more time to adjust. Unless there's something you didn't tell us in this thread... ?

      Premedicating is intended to prevent flu-like symptoms, particularly fever. Migraine is a whole different animal, so it doesn't automatically follow that premedicating should also prevent migraine (even though Tylenol is also a pain reliever), which isn't an expected side effect of Betaseron. And, not surprisingly, your experience has shown that it doesn't.

      Some people medicate with 10 to 20 mg of oral prednisone taken with each injection. Again, the intention is to prevent flu-like symptoms. It may or may not help with migraine. Has your neuro suggested this? If not, why not? (That's a question for you to answer for yourself, not for me).

      The US VA medical service also allows for the use of pentoxifylline (400mg 3X/day; although I'm not up on this one enough to know how a blood thinner works to reduce flu-like symptoms). As far as its interaction with migraine, I came across one study that said it didn't help migraine. I found another source that said it can make migraines worse.

      If the problem is a drug-induced migraine, maybe a better approach is to stop trying to address it as if it's a flu-like symptom and treat it like a migraine. Has your neuro addressed it this way? If not, why not? Again, questions for you to answer for yourself.

      As you know, with migraine the first approach is to remove offending agents. The next, related step is to avoid triggers. The third step is to use preventive meds, and the fourth is to try to stop a migraine after it starts.

      It looks like you've bypassed the first two steps, and the second two aren't working. So perhaps the next questions (for you and your doctor) are whether/why Betaseron is SO important that 1) it's worth going through MORE torture in hopes you'll eventually adjust, 2) your neurologist should try you on different migraine meds (with their own side effects) to try to keep you on it and 3) you're not following the first two steps and stopping it altogether. Again, questions for you to answer for yourself.

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        #4
        Thank you redwings, you are right. I think their train of thought was that they could eventually get my body used to the medicine and into the next titration. A beta nurse did tell me she had a man that took a whole year to get onto the meds, but you are right - I have no idea what the side effects holding him back from moving up were. I think the problem is that I called them "headaches" to the doctors in the beginning. What they really are is the start of migraines. They are always on one side, and in one eye and temple. ALWAYS. So that is clearly migraine, and they started the day after I started the betaseron. I have always suffered from migraines, which is why I take topamax.

        You have given me a lot to think about. The problems are that I don't have insurance, and betaseron gives the best assistance and that I really want to be on an interferon. From what I understand, if I go off beta the next step would be to try copaxone. I would really prefer to stay on an interferon.

        Though, I don't know if I can deal with the migraines. I appreciate your comments as always.
        Sasha - dx January 2011; tysarbi, zanaflex, gabapentin, and baclofen
        ~Life is not about waiting for the storm to pass, it is about learning to dance in the rain.~

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