Back to all discussions

Disease Modifying Therapies

Share your experience with disease modifying therapies for MS. Get the conversation started.

  1. Shortly after I was diagnosed with MS, I began taking Copaxone as my disease modifying therapy. I was doing well with it for almost three years, but then my injection sites started to be very painful. I becamse less compliant because taking this shot every night was not pleasant. My neurologist suggested I switch to Tysabri, and I have now been on it for over a year. My MRI is stable with no new lesions, which is great news. What's your experience with the disease modifying drugs?

     

     

    1. In reading your post, I thought I was reading something I had posted myself. That's my exact experience with it except I've not yet begun the Tysabri. I'm getting my first infusion tomorrow. Have you had success with the Tysabri? I'm really afraid of it and don't want to take it.

    2. LA703,

      Now after 4 years I am still on Tysabri and my MS is stable. There have been no new lesions (or at least nothing significant) and my JC Virus test continues to be negative. A lot of people are scared of this drug, especially the first infusion. I have a friend who called me from his car after his first, and he was in tears because he was so relieved to have it done and had been really afraid. There is no need for this type of fear --- there are few side effects to Tysabri. Remember it takes a few infusions before the drug really takes hold of the MS so don't expect an overnight miracle. Good luck and if you have questions, be sure to ask your doctor, nurse or even those of us here. I trust you will do well on Tysabri - the majority of people do.

  2. I hope to hear more from those of you who were talking about this topic on FB.

    1. Laura,

      I started Copaxone as soon as I could after the diagnosis was made official. I stayed on Copaxone for almost 4 years. But I have to admit that the last year, I became less than 100% compliant. It wasn't the pain of injection for me however. I had a routine where I would inject after my shower in the mornings. But I became depressed and was not showering every day. I then started skipping injections as well.

      After relapsing and progressing, I researched other treatment options. Between my neurologist, rheumatologist, and myself, we agreed to try Rituxan. I'm so glad that we did as it has worked for my RA and MS. My MRIs have not changed at all. No new symptoms to speak of (although my old ones are still there to varying degrees). I'm stable! I'm fortunate that the drug works for me. 😀

      Lisa

       

      1. I am at a turning point I t hink. I have had no changed on my MTI since 2012, no new or active MS. In 2012 my avonex quit working and I noticed late in day I had slowed down with my walking drastically. Since then I have been on copazone 40 but am now having all kinds of issues with walking and balance. Just had another MRI and no active lesions or new ones. So why am I having all this difficulty? Maybe the medicine is not working? is that possible?

        Anyone out there who has had this happen or has any ideaas, please reply. Thanks,
        anna Williams

    2. The FDA approved Biogen's Tecfidera (formerly known as BG-12) today... This is the drug so many have been waiting for - a pill twice a day sounds much better than needles. Especially with the clinical trial successes they had .

      Read about it at -

      http://www.fda.gov/NewsEvents/Newsroom/PressAnnouncements/ucm345528.htm

       

       

      or create an account to reply.