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“Your Drugs Aren’t Working”

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  • “Your Drugs Aren’t Working”

    When I heard my MS specialist say that, it was like a swift kick in the stomach. And the dude giving me said kick was wearing metal-tipped baseball spikes. Oomph. That hurt. Over the past few years, I’ve given myself well over a thousand injections. And honestly it’s been super easy. Zero side effects, rare injection site reactions, and only the once-in-a-blue-moon painful jab that elicits a cursing. But a relapse in May, my second in just over a year, was a sobering experience, and not just because I had to lay off beer while I was taking 1,200 milligrams a day of prednisone. It called into question the effectiveness of those daily injections.

    That’s always a concern with disease modifying drugs for multiple sclerosis. Even though you don’t see improvements—the role of these drugs is to slow down the MS, not reverse it—you have to trust they’re doing their job. Statistically they all work. Unfortunately, their efficacy is different in every patient. One drug might work far better than another.

    So now my neurologist has tasked me with choosing a new treatment. I know them all quite well, and there may even be clinical trials that have merit. My wife and I have some difficult decisions ahead, but I welcome them. We’re lucky to have such an array of choices to fight such a nasty disease. That certainly wasn’t the case just 15 years ago when there was a lottery just to have the opportunity to get Betaseron, at the time a new, untested drug that was the sole FDA-approved treatment for MS. So today, July 7, I woke up and for the first time in years I didn’t poke myself with a needle. Weird. One door closes, another opens. I can’t wait.
    Dave Bexfield

  • #2
    Good luck

    Good luck Dave..


    • #3

      What a beautiful statement about the growing options for this disease that takes its very individualized course. Thanks for letting us know.
      I'll put 'it' out there for you! All the best on this adventure, too!


      • #4
        Hi Dave. Sorry to hear about this turn. My course has led me to seek all alternative treatments.

        It was a long time coming but now that I've truely started to fight this, I'm going all the way!


        • #5
          Dave...Can you feel the good vibes coming your way??? We are all sending them! My Copaxone that I faithfully injected didn't work but Rebif has seemed to work like a charm for over a year! Good luck


          • #6
            I'm going through the whole drugs not working now. My neurologist is wanting me to take the NAB's test so I can get on Rebif. Fingers crossed for us all!


            • #7
              Ugh, that stinks! Hope you figure out something that works. It sounds like you are having to adjust all over again.


              • #8
                Dave, you have brought both inspiration and humor into so many of our lives.

                Rebif has been the charm for me!

                good luck.



                • #9
                  Dave - your outlook is inspiring to say the least! I love it! "May the force be with you"



                  • #10

                    how did they determine the drugs were not working? do they give it time ( years?) & check mris?


                    • #11
                      Thanks for the kind words. I'll keep everyone posted as to what direction I'm going to take.

                      As for how the docs know what is and isn't working, well it's a tough call. If you are having relapses and they are getting more frequent, that's one sign. Another is your level of disability and how much (and how fast) it is increasing. And another is lesion load on the brain or spine.

                      With my walking getting a bit more sketchy and two relapses in the last 15 months, neuros opted to pull the trigger. Not bad, but it could be better, and keeping this disease at bay isn't something to hem and haw about.
                      Dave Bexfield


                      • #12
                        Thanks for sharing...

                        I am thinking about changing my "drug of choice". Keep us posted!

                        Our thoughts are with you!


                        • #13
                          Damn those Drugs that aren't working ...

                          Dave - and ActiveMS friends -
                          My heart sinks to read this - though I've heard it in person from you too. My experience is living with PPMS - and since Copaxone (with the macarena) is not approved for PPMS, I just take it, and live with FAITH (of some sort most days) that it's helping? slowing the progression? limiting new lesions? but hard to tell. New symptoms this week ... guess that's all part of it.
                          I'm in the process of recording my story - with a song "When one door closes, another door opens wide" -- will have CD available soon! Stay tuned (pun intended)
                          Caitlin in ABQ