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.
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.
Comment