[kicker]

Liberation- I read things in the paper about MS, then it's gone. Anyone try this and what happened? After awhile people think MS is almost conquered and I don't think that at all. Maybe turns in good research directions but certainly not the end. Just read about T-cells (which my old neurologist talked about years ago) and the article (MAY be a cure for MS) made it sound like a done thing. No worries.

[MSbelle]

CCSVI has been proved to not be a cure at all for MS. There have been many who've had relief of some of their MS symptoms, but as far as disease progression goes, it doesn't touch it.

You mentioned T cells. T cells and B cells are what attack myelin. There are drugs that work on this mechanism that have been an excellent advancement in treating MS. They are monoclonal antibodies. Natalizumab (Tysabri) interrupts the ability of these inflammatory cells to pass through the BBB and attack; Rituximab (Rituxan) destroys B cells only and allows them to grow back, hopefully, healthy and not programmed to attack myelin; Alemtuzumab (Lemtrada) destroys B and T cells and, like Ritux, they will grow back without the message to attack myelin.

Tysabri is usually given by IV once a month.
Ritux is also usually given IV monthly.
Lemtrada is given over 5 consecutive days on year one, and over 3 consecutive days on year two. And that's it for most people.

In my humble opinion, these are the best drugs on the market to fight MS. I completed my five Lemtrada infusions for the year a couple of weeks ago.

[Kitty]

Originally Posted by MSbelle

In my humble opinion, these are the best drugs on the market to fight MS. I completed my five Lemtrada infusions for the year a couple of weeks ago.

I'm interested in Lemtrada. I have been reading up on it (https://www.lemtrada.com/patient) and trying not to focus on all the "warnings and side effects".

What scares me is that once you get your infusions there's not much you can do if it doesn't agree with you.

How have you tolerated it? Are you RRMS or SPMS? I have an appt on Friday with my Neuro and I plan on discussing this with him.

[MSbelle]

Kitty, I'm RRMS. But some neuros are prescribing it for progressive MS even though it's not marketed for that.

I've tolerated it extremely well. I had a bad three days post treatment but I'm convinced that was the steroid crash (5g of IVSM over 5 days, no taper, and it was my first time on steroids ever). And by rough, I mean I slept for three days/nights straight pretty much, and had no energy... felt like I had mono again.

Day four post I came around, and everyday since has been wonderful. I have energy and I am walking unassisted after 6 months with a walker. BUT these are not effects from the Lemtrada. It's from the IVSM. It takes around three months (give or take) to start seeing any improvement from the Lemtrada.

There's an AWESOME Facebook group for Lemtrada that I can't suggest strongly enough. If it weren't for some of the people there, I would have not even taken the steps to start. I am on many the FB groups for DMDs (Lemtrada, Tysabri, Gilenya, HSCT) and it became clear that my neuro had it right when he mentioned he wanted me on Lem.

[Lumia_black]

Originally Posted by MSbelle

Kitty, I'm RRMS. But some neuros are prescribing it for progressive MS even though it's not marketed for that.

I've tolerated it extremely well. I had a bad three days post treatment but I'm convinced that was the steroid crash (5g of IVSM over 5 days, no taper, and it was my first time on steroids ever). And by rough, I mean I slept for three days/nights straight pretty much, and had no energy... felt like I had mono again.

Day four post I came around, and everyday since has been wonderful. I have energy and I am walking unassisted after 6 months with a walker. BUT these are not effects from the Lemtrada. It's from the IVSM. It takes around three months (give or take) to start seeing any improvement from the Lemtrada.

There's an AWESOME Facebook group for Lemtrada that I can't suggest strongly enough. If it weren't for some of the people there, I would have not even taken the steps to start. I am on many the FB groups for DMDs (Lemtrada, Tysabri, Gilenya, HSCT) and it became clear that my neuro had it right when he mentioned he wanted me on Lem.

So yo uhad the libereration treatment? after it yo udon't need a cane or anything?

Do MSer's need to have some certain criteria to get this done or can anyone at any stage do this? Sounds like it might be a good thing to do....

[MSbelle]

Noooo, I had Lemtrada!!! Not CCSVI! And the immediate good effects on my legs was purely from the IVSM (prednisone), NOT the Lemtrada. Lemtrada takes months to start working.

[TheSleeper]

http://blogs.vancouversun.com/2013/1...ple-sclerosis/