Hello Mable,
Why did Giavononni wait to tell a patient that brain loss volume leads to disability?
I have no idea; I can only speculate. But I congratulate him for talking about it now. His website has a monthly Q & A section where that question can be asked.
Brain atrophy as a clinical endpoint in DMT trials has only been introduced in the last few years. Before recently not much attention was given brain loss volume. Unlikely that many neuros have discussed it with their patients, unfortunately.
However, going forward I believe brain atrophy will be discussed in the context of which DMT to choose; it is just now beginning to be recognized as a vitally important factor relative to disability.
Gilenya is better at reducing brain loss volume (BLV) than most DMTs although I personally would not choose Gilenya if I had MS. But the particular patient mentioned was NEDA on it, Mable, so for her it was/is effective.
All the other DMTs for MS are worse than Gilenya in reducing BLV except those Giavononni listed … HSCT and Lemtrada 0.2-0.25%, Tysabri 0.25-0.3%, Ocrevus 0.35%, Gilenya at 0.4%.
So, what should this patient on Gilenya be taking instead of Gilenya? That is a tough question because she is NEDA on it and her response to the others cannot be precisely predicted. With DMTs there are patients who develop neutralizing antibodies which render a DMT useless or even counterproductive.
HSCT is not widely available even though, IMO it is clearly the most successful DMT. Next on my list is Tysabri; not Lemtrada even though some do very, very well on Lemtrada. With Lemtrada most people (but not all) will battle significant secondary immunity problems. That is why Lemtrada gives me pause.
With those thoughts in mind, Tysabri would be my choice whether I was JCV positive, or negative. Before going on dose extension with Tysabri (btw, convincing the neuro literally nearly took fist-fighting; our arguments were that intense, he finally caved, learned, or something and agreed that dose extension de-risks for PML. The lesson here is that sometimes you actually have to fight or change doctors for what you are convinced of, as Linda explained in her post) and before switching to Ocrevus my spouse had received more infusions of Tysabri than anyone in the world according to her neurologist. Ocrevus is a very, very good DMT but not quite as effective as Tysabri in reducing fatigue and BLV.
The PML aspect often scares patients away from Tysabri when MS progression should be leading MSers toward Tysabri, IMO.
IMO, HSCT is the best option. But if HSCT is not available, Tysabri is the next best, IMO.
Please keep in mind not every DMT works well for every patient.
My opinion is based on experience in my household and results found in DMT trial and real-world data.
Isn’t it fun choosing a DMT? It would challenge Solomon. Choices can be narrowed down by prioritizing what is most important to an individual but it still can seem like a crap shoot.
Good luck and certainly, you have my best wishes!
Oh, one last point… we all lose brain volume as we age. In one scientific study the BLV per year was “0.20% at the age of 35 years increasing to 0.52% at 70 years” in healthy subjects. Often, BLV in MS is listed at 0.7% and higher. So, the best DMTs get that rate at very near normal. Recall even Gilenya was at 0.4%.
In the near future, BLV will be used as a marker for how well a DMT is doing for a particular patient, I’m certain.
Why did Giavononni wait to tell a patient that brain loss volume leads to disability?
I have no idea; I can only speculate. But I congratulate him for talking about it now. His website has a monthly Q & A section where that question can be asked.
Brain atrophy as a clinical endpoint in DMT trials has only been introduced in the last few years. Before recently not much attention was given brain loss volume. Unlikely that many neuros have discussed it with their patients, unfortunately.
However, going forward I believe brain atrophy will be discussed in the context of which DMT to choose; it is just now beginning to be recognized as a vitally important factor relative to disability.
Gilenya is better at reducing brain loss volume (BLV) than most DMTs although I personally would not choose Gilenya if I had MS. But the particular patient mentioned was NEDA on it, Mable, so for her it was/is effective.
All the other DMTs for MS are worse than Gilenya in reducing BLV except those Giavononni listed … HSCT and Lemtrada 0.2-0.25%, Tysabri 0.25-0.3%, Ocrevus 0.35%, Gilenya at 0.4%.
So, what should this patient on Gilenya be taking instead of Gilenya? That is a tough question because she is NEDA on it and her response to the others cannot be precisely predicted. With DMTs there are patients who develop neutralizing antibodies which render a DMT useless or even counterproductive.
HSCT is not widely available even though, IMO it is clearly the most successful DMT. Next on my list is Tysabri; not Lemtrada even though some do very, very well on Lemtrada. With Lemtrada most people (but not all) will battle significant secondary immunity problems. That is why Lemtrada gives me pause.
With those thoughts in mind, Tysabri would be my choice whether I was JCV positive, or negative. Before going on dose extension with Tysabri (btw, convincing the neuro literally nearly took fist-fighting; our arguments were that intense, he finally caved, learned, or something and agreed that dose extension de-risks for PML. The lesson here is that sometimes you actually have to fight or change doctors for what you are convinced of, as Linda explained in her post) and before switching to Ocrevus my spouse had received more infusions of Tysabri than anyone in the world according to her neurologist. Ocrevus is a very, very good DMT but not quite as effective as Tysabri in reducing fatigue and BLV.
The PML aspect often scares patients away from Tysabri when MS progression should be leading MSers toward Tysabri, IMO.
IMO, HSCT is the best option. But if HSCT is not available, Tysabri is the next best, IMO.
Please keep in mind not every DMT works well for every patient.
My opinion is based on experience in my household and results found in DMT trial and real-world data.
Isn’t it fun choosing a DMT? It would challenge Solomon. Choices can be narrowed down by prioritizing what is most important to an individual but it still can seem like a crap shoot.
Good luck and certainly, you have my best wishes!
Oh, one last point… we all lose brain volume as we age. In one scientific study the BLV per year was “0.20% at the age of 35 years increasing to 0.52% at 70 years” in healthy subjects. Often, BLV in MS is listed at 0.7% and higher. So, the best DMTs get that rate at very near normal. Recall even Gilenya was at 0.4%.
In the near future, BLV will be used as a marker for how well a DMT is doing for a particular patient, I’m certain.
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