Announcement

Collapse
No announcement yet.

SPMS & Tysabri

Collapse
X
Collapse
 
  • Page of 1
  • Filter
  • Time
  • Show
Clear All
new posts
Previous template Next
    #1

    SPMS & Tysabri

    Hi

    I have SPMS and am currently on Gilenya. I have had stable MRI's, but continue to feel as if my MS is progressing. Especially when it comes to my mobility. My neurologist and I are discussing Tysabri. to make the issue a little more difficult i am JC + and have been on other immunosuppresant drugs. i also have RA, which thank god is fairly stable!!

    I am curious if there are others out there with SPMS, has your MS stabilized? Anecdotally I read that some people believe their MS has improved. I would love to hear from you, get your viewpoints especially if you have SPMS.

    Thanks. GGritz
    GG
    Tags: None
    #2
    I have a good friend who has SPMS and has been on Ty for >4 years and feels that it has helped her MS more than any other DMD. She has been on Copaxone, Beta, and Rebif. She however, is JCV-, and has no other risk factors.

    You are carrying two risk factors for PML. That is something to consider long and hard. Have you thought about Tec? I also know another friend that has SPMS and is on Tec. It just depends on your risk tolerance.

    Good luck with whatever you choose.

    Lisa
    Moderation Team
    Disabled RN with MS for 14 years
    SPMS EDSS 7.5 Wheelchair (but a racing one)
    Tysabri

    Comment

      #3
      Hi GG, I am much like Lisa's friend , one difference that I know of, I have been on Ty for almost 7 years!
      I agree about your risk factors but, you could have pretty good odds on Ty for 2 years... you and your neuro need to decide.

      Good luck and best wishes
      Linda

      Comment

        #4
        GG,

        Perhaps, one of the factors to consider is your JCV index number. It is NOT the only consideration but may help when deciding about Tysabri.

        Here are a couple links which might be helpful to you: Promising Results for Natalizumab in Progressive MS
        http://www.medscape.com/viewarticle/772939

        JCV Antibody Index Stratifies PML Risk in Natalizumab-Treated MS Patients
        https://cmscactrims.confex.com/cmsca...Paper1642.html

        If you go to this site be sure to click on the box which says [pdf] to pull up charts which you can then enlarge. Save the pdf for future reference. You will probably have a blood test done to see what you JCV index is and the result will be one more item to factor into your treatment decision. Best to ya.

        Comment

          #5
          Myoak,
          You are a WEALTH of information. I love reading your posts. Thanks for sharing. I'm JC- but feel I might be SPMS. Both sets of information are downloaded and saved!

          Comment

            #6
            GG, I forgot to tell you:
            some of sx got better after being on Ty about 6mths.
            my quality of life improved to where I have the energy to do all that I want to.
            my MRIs got better, yes actually some lesions got smaller and some went away.
            my progression halted

            I hoped my R leg would get better-not drag but, that did not happen
            Take care
            Linda

            Comment

              #7
              SPMS

              Thanks everyone for your comments. I especially appreciated the article references. I have decided to give this a shot. I can handle the risks for at least1-2 years and then I will at least be able to say I've done all available to me to try and stop this deterioration! I'm praying that I have more "good days" and that the roller coaster smooths out!
              GG

              Comment

                #8
                GGritz, I hope your experience is as good as mind has been. My doctor diagnosed me with SPMS and put me on emergency Tysabri. I have been on the treatments for 3 years and there has been no more progression.

                Now, my neurologist says she thinks I'm still RRMS. Maybe you are not SPMS after all.

                Comment

                  #9
                  I have been on Ty since diagnosis 3 years ago. At my appt. this past Friday, my neurologist moved me from RRMS to SPMS, although I wonder if I haven't been SPMS since diagnosis. My brain MRI 10 days ago showed no new lesions and no active lesions. However, the lesions on the spine are the ones where damage is occurring. There was some recovery, but she said, eventually, the downward progression continues due to aging of the system.

                  I've continued to have a slow, negative progression in my walking, and I imagine this will continue, but I plan on staying on Ty since I am JC-. The doc thinks Tysabri does have benefit, even with SPMS, since it still stops the white blood cells from crossing "yea old blood brain barrier". After reading about all the other DMD's, I'm happy to stay on Ty. I'll continue to look for ways to allow me to be mobile, even if it is seated.

                  Comment

                    #10
                    I was on Copaxone for +2yrs, no DMD for about 2? yr; Rebif for about 6 mons., then no DMDs for about 3+yrs; now on Ty for 2.5yrs.

                    Copaxone and Rebif in my estimation did nothing to improve any of my MS sx. I felt sick much of the time on both meds while contending with side effects and injection site reactions. I eventually experienced a few unusual 'events' post Copaxone injections, and was take off of it.

                    I started Ty about 2.5yrs ago. Within the first 3 months, 2 of my 3 MS recovery wish list items resolved after 12+yrs.

                    The 3 items on my list: Insomnia, bowel incontenience and fatigue. Insomnia and bc resolved, and I think fatigue has improved, although not to the point I consider it resolved.

                    I've also had progression involving mobility, detected via clinical exam and personal observations, despite the Ty improvements. Mobility related progression was observed before I stopped Ty for a period of 3 months.

                    Dx'd with Gait Apraxia probably the result of the MS rebound after stopping Ty in the 2nd year.

                    That was approx. 9 months ago and I haven't completely recovered from the episode of G Apraxia, although it's much improved.

                    Rebound was particularly difficult, GApraxia aside. Lots of cognitive problems, in a highly aggitated state, emotionally fragile, and totally aware of my 'status'. My cognitive sx's and emotional status resolved pretty quickly after resuming Ty infusions.

                    So it's been a mixed bag of improvements I only dreamed of before Ty, and progression I wasn't exactly expecting, but always knew were a possibility, after Ty. Then there's my +JCV status and high index.

                    Brain MRIs have been stable since my MS dx +12yrs., with the exception of rebound related MRI 'changes'.

                    I'm +JCV, index of 1.81 as of March?April this year. Doc is suggesting I change DMD med, but I've decided to stick with the devil I know, for now. Much about risk of JCV/PML has changed since the Ty clinical trials, my suspicion is the same will be true over time and wider use for most of this new generation of DMDs.

                    Wishing you the very best of luck with your decision.

                    Comment

                    Previous template Next
                    Working...
                    X