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5112396 tn?1378017983

Drug Trial Update!

Today was my week 48 visit on my drug trial extension (was on the blinded phase three for 144 weeks prior). I was able to go over the MRI that was taken this very morning with the principle investigator and see it compared to the several I've had through the years, from the beginning. Nothing active, and everything looks stable. In fact, some of the past lesions are less pronounced (as in some manner of healing has taken place).

I'm EDSS 1, on the basis of bilateral Babinski response, but otherwise, nothing on the clinical exam either. So, it looks like I'm stable. There was one new lesion found in January 2013, but nothing of note found since then. This is on a 1.5T, so I'm aware this isn't the last word in disease activity imaging, but I'll take it!

We all know how unpredictable MS can be, so this doesn't make me feel invincible by any means. But it does mean I'm happy with my choice to participate those years ago. The name of my game it to have the most boring disease trajectory possible. So far so good!
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Avatar universal
Good news! There's no downside to a stable MRI. I'm glad your treatment seems to be working. I agree that being proactive is so important. Just waiting for things to happen is a recipe for disaster, with the added factor of having to kick ourselves when they do.

For me, my MRIs are stable in recent years, all to the good, but that hasn't kept me from having 2 significant relapses. The one that started 10 or 11 months ago was my worst yet, and although I'm over the big majority of it, I do have some ongoing stuff that could be permanent. So I'm wishing you and all of us both boring MRIs and minimal symptoms!

ess
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Avatar universal
Woohoo!  Congratulations. Stability is such a lovely thing to have to start your new year off on the right note.

Corrie
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5112396 tn?1378017983
Thank you both! Ess, I'm so sorry that it hasn't translated to relapse-free for you. I know MS loves to be counterintuitive like that. All these great results won't mean so much to me if I wake up tomorrow with issues that impact my day-to-day. We ride the waves, don't we?

Corrie, you're right! I'd not even thought of it like that. 2015 is starting off well. I was officially diagnosed in early January 2011. I much prefer this!
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11305938 tn?1417998533
Yay congrats! I am going for my fist. Mri since starting tysabri, I think for the first time I should have good news. Fingers crossed.
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5112396 tn?1378017983
Thank you! I hope tysabri has been doing the trick. When are you scheduled to go in the tube?
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1831849 tn?1383228392
Go Immi! Stable is as good as it gets for us :-)

Kyle
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5112396 tn?1378017983
Thanks Kyle!
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5887915 tn?1383378780
That's terrific news to hear and a great way to start off 2015!

My mum has recently started a drug trial but apparently there is a chance she may not get the real drug and a computer chooses people randomly. All participants have bvFTD which is dissapointing that some won't get what they need.

I'm just hoping that she does get the real drug but if she doesn't she can in about 18 months when it's finished which will be all too late for my mum. She's only 67 but her father had this we believe but he was dx'd with Alzheimer's at only 50 back when there wasn't MRI or blood testing.

Did you know if you were going on the real DMD from the beginning?

Sorry I'm drivelling on here. I'm really glad your MS is stable which is as good as it gets really.

Karry.
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5112396 tn?1378017983
We were also randomised and blinded for the first 144 weeks (Phase III). On this particular study we were randomised into a group that got Avonex or a group that got daclizumab (the study drug). To make sure we didn't know what we were getting, I injected myself once a week at home with something that may or may not have been Avonex, and I went to the hospital once a month where I was injected with something that may or may not have been daclizumab. All of the injections were also 'blinded' as in prepared and boxed differently than commercial Avonex.

With MS, the drug studies usually don't involve a group that gets only placebo The whole time I was on this study, I was on a DMD. I just didn't know which. That's because there are proven treatments out there. To deny said treatment once it's already established is deemed unethical.

These studies (and I can only speak for Ireland here) have to pass rigorous Ethics Committee scrutiny before they're given the go-ahead. So this was a comparison study—does this drug work and if so, how much better does it work than what's out there already?

I've now been on the extension portion of the study for 48 weeks now, meaning we're all unblinded. I know for the last year at least I've been on daclizumab. I'll only find out what I was on all along when the extension finishes up, or if I chose to exit the study. The extension is typically the last stop before they crunch all the numbers from the last 10-15 years of data collection and submit the medication to the FDA et al. for approval. It's a very, very long process.

It's been a real eye opener to see how it all works. Just a small example, of the 11 or so MRIs I've had, it takes a long time for that machine to start up because the first few minutes is spent positioning and securing my head to as close (to the mm.) to all my past MRIs as they can get it. The comparison information over time is rendered a bit useless otherwise, because in the detail-oriented world of drug research, my head a centimeter to the left of where it was last year is considered MRI apples and oranges.

Or the fact that our liver function tests on Tuesday were delayed because the disc our blood goes into was from 2014 and the machine refused to scan it because it was 2015 (this thing here http://www.poct.co.uk/images/large/ABAXIS%20ROTOR%20WITH%20BLOOD%20image%20small.JPG) And oh the amount of paper work and hell that rains down if a nurse writes a date or time wrong! I'm serious. These people mean business.

What I feel about what your mum is doing, based on my experience, is very deep. I remember when I was deciding to go on this trial, I was weighing up the risks and benefits. And I just took some time out and realised how lucky I was to be overwhelmed by options when I was diagnosed, instead of being overwhelmed by helplessness. And that was ONLY because many thousands of unsung people participated in those early DMD drug studies decades ago when there was little guarantee of effect or safety. Our DMD options quite simply would not exist were it not for them. It is the same with what you mother is doing. I do certainly hope she's on the active drug. But if it isn't, from the bottom of my heart I thank her and all the participants. I love to see photographs from outer space, but to me she's the true pioneer.

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5887915 tn?1383378780
Wow thanks for all of that, you have helped me a lot. I know a little about the drug my mum is on and it is not a DMD. There are no treatments for bvFTD but this drug was given to some people in the UK and it helped them feel a bit better in themselves and I think there was only about 10 people. This study is a not just in Australia but across the globe and my mum is one of only a handful to be from Australia as it's quite rare bvFTD compared to other dementias. She's just done her first month and so far so good in that she's not getting any side effects.

As she has the behavioural Varient of frontotemporal dementia she refused to go on the first day of the study but she eventually started a couple of weeks later phew ;-). This is one of the first things to be done for FTD so it will be very exciting if the drug shows promise. My mum is a wonderful woman who has been my rock throughout my life so I really want to see her feel better.

Thanks for your kind words and I think I can view all this in a different light now.

Karry.
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