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5112396 tn?1378017983

Drug Study Extension, Week 96 - No evidence of disease activity!

So today was my periodic "MEGA APPOINTMENT" where I get my MRI, neuro psych testing, two physical exams, questionnaires, etc. for the drug study I'm on. I was on the Phase III for 144 weeks, and this is week 96 of the (unblinded) extension. I get to go over the MRI about half an hour after I take it with the study's principal investigator. There are still a lot of obvious old scars, but no new lesions, no active lesions, nothing on the EDSS bar the babinski's that's always there. Oh, how I love being a boring patient.
17 Responses
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382218 tn?1341181487
Great news! Very pleased for you, immi.
Helpful - 0
5112396 tn?1378017983
Thanks so much! There are so many ups and downs with MS, that it helps to shout the 'wins' from the rooftops!
Helpful - 0
5112396 tn?1378017983
Cheers! Early Christmas pressie is a great way to look at it.
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5265383 tn?1669040108
This is wonderful news .. congratulations :).
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12080135 tn?1453627571
That's top news Immi, so pleased for you. Keep smiling, early Christmas pressie xx

Nx
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5112396 tn?1378017983
They've published some interim reports, but bear in mind this is a drug company publishing results from a trial they themselves are conducting. You have to look at the results critically.

I will say the trial, at least from the end of things I'm around, is scrupulously conducted. Here is an abstract from a recent New England Journal of Medicine.
http://www.nejm.org/doi/full/10.1056/NEJMoa1501481
Helpful - 0
5509293 tn?1428531475
That is pretty awesome news. It is going to be cool for everyone when the study is published but so happy to hear it is working for you.
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5112396 tn?1378017983
Cheers!

I give myself one little shot, once a month. The technical name is Daclizumab High-Yield Process (DAC-HYP), though they recently secured FDA marketing approval (a separate process from drug approval) to call it Zinbryta.

You can read the more specific details about the study here: https://clinicaltrials.gov/ct2/show/NCT01797965
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12832842 tn?1448728801
Your a trooper and I'm so happy!! What drug is this? Infusion? Pill?
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5112396 tn?1378017983
Thanks so much! We all have good and bad patches, but I am trying to make sure I appreciate and bask in the current calm.
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9745005 tn?1410044366
How fantastic!  What great news, I hope it continues for you!  
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987762 tn?1671273328
COMMUNITY LEADER
WOW that is fantastic news.......you keep being a boring patient babe!

oh happy day's.......JJ :D
Helpful - 0
1 Comments
Ta JJ!
Avatar universal
Congrats Imm and thanks for taking part in a study that could benefit all of us.
Regards barb
Helpful - 0
1 Comments
Here's hoping! Part of the study isn't just trialling the drug but also having our blood studied for potential biomarkers. Research is a slow moving train, but it does seem to be moving forward.
15288417 tn?1446902183
Hi,
Great news! Congratulations!
T
Helpful - 0
1 Comments
Thanks!
Avatar universal
Congratulations!! That is great news!
Helpful - 0
1 Comments
Cheers! It's not to say I don't have tired days, but it's psychologically reassuring to see stable MRIs. My corpus callosum has tell-tale battle scars, but they're the same as they've been for a while now!
11079760 tn?1483386130
That is awesome!! Congratulations!
Helpful - 0
1 Comments
I did a little happy dance, I'll admit!
Avatar universal
That's freaking awesome news!!  Congrats!!!

That is one long day of testing though. You deserve a treat to endure that and of course, you need to celebrate!!

Is the study going on for much longer?

Corrie
Helpful - 0
1 Comments
I signed the paperwork yesterday for the next 'phase'. I don't think it's officially considered a separate phase, it was just the legal bit that comes around every so often. The drug *might* be approved in 2016, but it's standard for companies to keep people in the studies even after approval for the sake of getting long-term data. They can technically halt the study when they like )just as I can halt my participation when I like), but I signed papers to the effect of 3-5 years.
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