Announcement

Collapse
No announcement yet.

Why switch your DMD?

Collapse
X
 
  • Filter
  • Time
  • Show
Clear All
new posts

    Why switch your DMD?

    Hi All,

    Why would YOU switch your DMD? I always thought a "treatment fail" or increase in progression (neurological tests, MRIs, etc.) would warrant switching. . .but?

    I was dx in 1994 (no tx then---Betaseron lottery---I was in my early 20's---wait and see approach). Flare sent me back to neuro in 1997 when follow up MRI showed AGGRESSIVE MS by INCREASED lesion load on 3-year follow up MRI. I started Avonex soon after that.

    Fast forward, today, 15 years later, still on Avonex. . .due to losing job three years ago, bad economy, bad experiences finding and keeping job that I could do, etc., I was forced to apply for SSDI. I got SSDI first try (that God!).

    My neuro wants to switch me to TYSABRI. I'm scared of it. . .PML risk, etc. I'm single, live alone, have no real family close by (or supportive). I haven't felt well in several years, but I "am comfortable" as I have a roof over my head, etc.

    I get a follow-up MRI this upcoming Monday. . .he wants me to switch. . .but I don't know. My MRIs have been stable. . .but I am on a slow downward spiral (nothing stops MS progression, right?). I'm in my mid 40's and 18 years since dx. . .I suspect SPMS stage threshold. . .but?

    Anyone been on Avonex 15+ years who is still on treatment? I feel my Avonex is my "trusted companion" so to speak. My head is spinning with everything. . .is TYSABRI that much better than Avonex?

    Baring a "treatment fail" would YOU switch? I'm looking for input from my fellow MSers. . .
    Life isn't about waiting for the storm to pass; it's learning to dance in the rain!

    #2
    Ive been on beta and am now on copaxone. My neuro is REALLY pushing tysabri on me, but I stand my ground with him. I dont want that drug because it scares me to death. I really want to give copaxone a chance. It wont stop the progression, nothing will, but it might slow it down. Imo, if your happy with avanox and nothing has changed in your mri's, I wouldnt change. But thats just me

    Comment


      #3
      I've been on Betaseron for the last almost-8 years now and lately my neuro has been pushing to switch me over to Gylena (sp?) because of the "ease" of treatment. I'm not convinced that all the bugs have been worked out yet, so I'm holding my ground and not switching over, since Beta seems to be working well for me.

      I truly think you need to weigh how your current treatment is working for you and whether you feel comfortable or not switching to something else. If all else fails, these forums are a great place to ask for other opinions since we're all pretty much in the same boat.
      Wendy
      "There are signs everywhere...."
      "Life is wasted if it's not lived as an adventure."

      Comment


        #4
        Thanks for your replies!

        Yes; thanks for the reassurance that "as the patient I should stand my ground!" If my MRI this upcoming Monday is stable, I will NOT change to Tysabri.

        If there are changes. . .I may consider it. . .but honestly with 15+ years on Avonex. . .it's stablized my MRI's (only a few mild flares). I "still look so good" but have tons of black holes and lesions. . . .but MS is a slow downward spiral. . .still no cure, yet!

        Blessings to All!
        Life isn't about waiting for the storm to pass; it's learning to dance in the rain!

        Comment


          #5
          My neuro is the same way .He wanted me on TY back in 2010 but I wasn't ready to try DMD's at that time. Scared.
          Now 2 years later he wanted me on Gilenya . I said what about copaxone . He reluctantly gave me the info packs for both drugs. After reading about both and see that Gilenya there is a "chance" of eye and heart damage the answer was clear to me that copaxone was the right choice for me.

          Copaxone is a amino acid that is also found in your body. The side effects are far less that other DMD's for most people . Some people get very bad sight reactions to were they can't take it. I just had my first shot yesterday and it went ok. My neuro on the other hand isn't happy that I chose this drug . He not sure that it will work on me because he thinks that I'm SPMS and not RRMS. But its my body. You need to do what is best for you. These drugs have side effects and are very expensive . But doing nothing at all for me was not a option any more. Fight for the med of your choice. If a med doesn't work for you then go one to another. We have choices. Its a good thing .
          dx.SPMS (baclofen,gabapenin,norco)
          started tecfidera 7/10/2013
          rituxan 11/13/2012 stopped due to side effect &it didn't help me (for RA and MS)
          copaxone started 4/2012 but stopped due to bad allergic reaction
          Matt.19;26 “With man this is impossible, but with God all things are possible.”

          Comment


            #6
            Switching...

            If your MRI is good why switch? If not switch. Drugs don't work forever our bodies get used to them and they stop working. Wow 15 years on a sting drug seams like a long time but if your brain isn't getting damaged I think your neurological must have some reason he wants you to switch, ask him

            Don't base your decision on fear or comfort alone, MS is just as scary and debilitating as are the drugs

            Do what you feel is best to protect your nerves and your brain. You know your body better than anyone, if your sick and having flareups on the avonex it may be time to move on. Good luck I'll be thinking about you, keep me posted, wendy
            moment by moment Wendy Rochet

            Comment

            Working...
            X