Real cures for MS (medical, not "alternative")

There is a post on the Barts MS Blogspot about induction therapies for MS (link below). These are treatments that are given once or twice and then the person who had MS doesn’t get any worse. In my book, these are cures for MS. The examples they give on the Blogspot are Mitoxantrone, Cladribine, Lemtrada, Anti-CD20 (with a question mark), HSCT-BMT.

I know from a post I responded to a few days ago that some people with MS aren’t aware that induction therapies exist. It’s great that the doctors who post on the Blogspot are trying to tell MSers about this. I presume it’s just a coincidence that it came up so quickly after the post on here. Just in case the Barts doctors read this thread: you guys are heroes, you are making a huge difference to the lives of people with MS, with the work on MS you are doing and with the information you provide on the Blogspot. Please keep up the fantastic work!

http://multiple-sclerosis-research.blogspot.com/2016/04/clinicspeak-do-you-understand-what.html

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You know who are also real heroes: the people who trial these therapies in order that the doctors can find out what works and what doesn’t. For example, Stella who had HSCT and had a total horror story journey and yet still managed to stay positive. Stella, together with her partner Marc (when Stella was too ill) kept a blog going throughout.

She wouldn’t have been able to have the HSCT without the doctors and researchers but it was through Stella, and other people like Stella, who had the courage in the early days (like the first Campath/Lemtrada patients) to take the plunge, so that the rest of us might benefit.

And of course I love the Barts blog too. Those guys keep on with new and different therapies and drugs to help us out and keep us all informed.

Sue

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From reading the slides on the linked to article, it mentions ‘rebound activity’. what is this? i have not heard this term before.

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The Barts Blog did a post on the rebound activity that can happen with Tysabri. Although this post is quite old it does explain some things.

“Firstly what does rebound mean. Rebound is disease activity greater than what was present at baseline.” They used to do a long washout (of the system) for those coming off of Tysabri but now they try and get the MSer onto their next drug ASAP after Tysabri, in some cases onto Gilenya.

http://multiple-sclerosis-research.blogspot.com/2013/09/ms-returns-after-you-stop-taking.html

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Here’s a more recent post on the rebound on the Barts Blog (6th April 2016). It discusses a case where the patient was on Tysabri then changed to the low efficacy drug GA.

http://multiple-sclerosis-research.blogspot.com/2016/04/will-real-ms-stand-up-rebound-death.html

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Barts is ace.

I’d not heard of induction therapies before and I’m confident I wouldn’t be on Lemtrada without that blog, it was never mentioned to me by my neuro or nurse. Thankfully I’m proactive in these matters.

It is the rebound effect which puts me off Tysabri - again something I only found out about through Barts.

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Do you know how Stella is now, i followed her diary on the msrc site,would love to know how she is.

J x

She provided an update in “New Pathways” this month and you can read it here.

Thanks for posting this link. It’s really good to know the latest from Stella. I think her blog really resonated with a lot of people and we felt close to her as a result of reading through her treatment.

Sue

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