Announcement

Collapse
No announcement yet.

Tysabri and MS Doc's changing practice

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

    Tysabri and MS Doc's changing practice

    Just over 2yrs ago, my MS doc's practice was in high mode, promoting Tysabri, with lots of patients in the infusion center, and in expansion mode for the increased damand for services. The infusion center expansion was very apparent.

    The change/downsizing? in the infusion center is striking over the past 12 months, (since the introduction of the Stratisify Test I'm thinking). I talked with one of the Tysabri nurses and she confirmed that my doc's practice is backing away from rx'ing Tysabri and the infusion center is clearly not as busy with MS patients.

    I also got a call earlier this week from my MS doc, who wants to see later this month, 2 months earlier than my scheduled appointment to discuss changing from Ty to Gylenia.

    I'm not eager to change DMD. I've already had rebound after a few months being off of Ty.

    My January titer is 1.78, a bit lower than earlier one which as 1.85. My doc dismissed the difference between the two test as insignificient, and I'm not disputing the difference.

    During the phone conversation with my doc, I reminded him that we discussed changing meds during the previous 3 office visits, including my titer lever, the risk of CJV, etc., and I was not then and remain just not ready to change meds. A case of 'The devil that I know'? Rebound fear?

    Ty is my 3rd DMD over +10yrs, and is the only med that I have experienced any kind of improvement with. In addition to that, I don't want to lose the ground I recovered, the improvements I've experienced since starting Ty.

    Currently I think I have reached a 'plateau" as far as improvements are concerned. But I'm also just not sure if I'm experiencing slight improvements in mood, cognition, energy. I just don't know.

    I know mobility has been more progressive this past year on Ty, and I just don't know what to think about that. Ty rebound progression was alarming, but I think I've fully recovered over a year ago from rebound with what seems to be permenant problems. In addition to the effects of rebound, I continue to have worsening problems walking.

    Forgive this 'stream of consciousness all over the place' style post, but I'm concerned about the change from Ty by my doc, and equally alarmed about what's in the future if I change meds. I assume the practice has reached their risk threshold for Ty, but is there more that I don't know?

    I'm eager to hear opinions from anyone else who has changed from Ty to Gylenia.

    #2
    Can't help you with the switch, but it seems really strange. I do feel for you, I am on 3rd DMD since 2006.

    I wonder if it is just your physician pulling back or are others at the infusion center. My neuro is more conservative so when my husband had asked about other options besides Tysabri, he was hesitant on the oral meds as not as much was known about their usage. But that was a year ago.

    Please let us know how it goes with your neuro. Good luck with the visit.
    Kathy
    DX 01/06, currently on Tysabri

    Comment


      #3
      penstater, the many infusion center up-grades 2yrs ago were impressive. More, newer, upgraded equipment for vitals, lots of new hire nurses to handle the increase in number of Ty patients. The infusion center is now low volume traffic, very slow pace compared to what it was at it's peak.

      As I mentioned, the MS infusion nurse verfied what I suspected, how empty the infusion center seems to be lately, and the loss of many MS patients. She didn't put a number to it, but did let me know there are very few MS'rs on Ty today compared to when I started Ty infusions.

      That together with the call this week from my ms doc for a 2 month early appointment to talk again about changing meds, I know the Ty glory days are coming to an end for my doc's practice. My doc is head of the brain institute which he established at the hospital med center.

      Curious if other Ty patients are experiencing anything similar, switching to other meds like Gilenya/sp?

      Take care and thanks for the reply and for the encouraging words.

      Comment


        #4
        MSW1963
        I'm sure I'm in a much smaller market than you, but my neuro is still gung-ho on Tysabri. I saw her last week and mentioned that I'd heard some neurologists feel DMD's might not be needed for older MS'ers that are no longer in the inflammatory phase (Dr. Vollmer from RMMSC has an interesting new video on YouTube that discusses this). Her response was, "If it ain't broke, don't fix it." Since I'm still JC-, I figure I'll stick with it for a few more years. If at some point I decide to quit, I don't see myself taking on another DMD.
        I, too, continue to have walking difficulties, but I really believe that is due to natural age-related nerve degradation (I just turned 62) and not at all related to Tysabri.
        I did ask her how Tecfidera is going, and she said she wouldn't prescribe it for someone unless it was the med of last resort. 1/3 of her patients have no problem, but the other 2/3rd's have severe side effects.
        The private practice she was in with at least four other neurologists had to close due to payment issues, ACA, Medicare, etc.,etc., etc. They split into two groups, one group hired by each local hospital. They are now salaried employees, and I could tell she wasn't thrilled.

        Comment


          #5
          ru4cats, my doc's hospital based practice was 'all in' when Ty was re-introduced several years ago.

          Two years ago when I started, was probably the trail end of the Ty 'boom' in my doc's practice. It is interesting to view the Ty marketing cycle from beginning to the present.

          I know Dr Vollmer is one of the MS gods, but as a patient who improved from decades of sx's, the 'no longer in the inflammatory phase=no treatment', I'm underwhelmed and not impressed. I was no longer in the inflammatory phase when I was in my mid 40's, before my MS dx. I'm definately feeling there may be some age-ism and/or profit motive in the theory. I also think both ageism and profit motive is playing a larger role in medical care, for everyone It's the next big thing in medical care.

          Glad to hear that you have a good MS doc who is still on board with Tysabri or other treatment options for you.

          Comment


            #6
            My Dr is at the RMmsC actually co-director. He is a Tysabri advocate, knows I'm 65 so, we have discussed the fact that ms relapses slow down in an older person but, that doesn't mean there isn't progression.

            I hopefully will stay on Ty until there is something better
            Linda

            Comment

            Working...
            X