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DMTs
For those on a DMT and needing/wanting to change it, are there any treatments that you have your eye on for when it’s approved?
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9 Replies
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There’s only one option right now for my primary Progressive MS (Ocrevus) and unfortunately it doesn’t penetrate into the CNS very well, so I am anxiously awaiting an alternative. I’ve been a little disappointed with the BTK inhibitor so far, but if one shows the same effectiveness as Ocrevus with better CNS penetration, I would definitely consider it.
I’m really counting on the further development of the CAR-T therapies and would love to get in on a clinical trial, but my EDSS of 8.0 disqualifies me from being a candidate.
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It’s unfortunate that you wouldn’t be able to apply for the clinical trial. Are you still moving forward with Ocrevus or taking a break from treatment?
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It is unfortunate, but I understand. To get a new treatment approved, especially in the phase one part of a trial, the manufacturer needs good quality data in order to prove that the therapy is safe and effective. I might be in desperate need of a therapy and at this stage, very accepting of risk, but I would not provide the measurable data needed.
For example, a standard test is a times 25 ft walk. I am wheelchair-bound with the use of about three digits on my left hand. My timed walk would be zero at the start and finish of the trial, so no matter how much better the treatment makes me feel, I am not able to provide the data needed for its approval.
Some of the preliminary CAR-T data is showing a 2-point reduction in the edss. Going from an eight to a six would be life changing for me, but since a six is the upper limit acceptable for the trial, that progress would be moot as far as measurable results go.
I understand, really I do, but that doesn’t mean I have to like it.
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This is true, and I like how you broke it down! Many patients don’t look at tests/trials this way, but it’s understandable since they want/need the treatment. There’s a process behind these treatments and studies that many don’t understand.
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I understand the newer CAR-T drug, have been assessed, but my neuros switched in the process. I meet with the new guy in about 3 weeks, and can only hope and pray that I am still a candidate.
I think my EDSS came in around 4, still mobile, but can’t drive or work!
Areli’s, thanks again for mentioning!
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Any thoughts or discussions on newer CAR-T therapy? I keep googling it and end up around what seems to be a dead zone. Would like to see more about it, even if it is phase 1b trial…outcomes look promising from what I can see!
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Here is the latest news on CAR-T therapy: FDA clears CTA313 trial for progressive MS, autoimmune diseases
I’m not sure if you came across this, but take a look!
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I think this is similar to the one I was currently looking at! We shall see in about 3 weeks what the status may be, for a Nov like infusion!
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Keep us posted!
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