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Why isn't this on the news?

As a reluctantly retired Nurse I get regular updates from the medical site Onmedica, and today I received one saying

‘NICE has recommended the use of alemtuzumab (Lemtrada) to treat relapsing-remitting multiple sclerosis in adults. In its technology appraisal it says alemtuzumab has been described by experts as a ‘revolutionary’ treatment for some people that could allow them to live their lives as they had before their MS diagnosis. The drug is given intravenously for five consecutive days and then no more until the second (and final) five-day course is repeated 12 months later’.

I know the MS Society has about this drug on their news page, but if this is indeed ‘revolutionary’ surely it should be spread from the rooftops. I would put up with 5 days IV therapy twice in a year and am sure many others would too. Although I suspect that the Postcode lottery will come in to effect and CCG’s would still be happy to cover the cost of current treatments and admissions.

Never drive, run, walk or crawl faster than your angel can fly!

Big Jen

Sorry Jen,

I don’t understand what NICE is actually saying. What does ‘…revolutionary treatment for some people…’ actually mean ? If you fit a very specific criteria, this drug may help ?

As for living your life as it was before MS diagnosis - does that mean this drug has the potential to undo any damage MS has ever caused ?

I seriously doubt that …but if that’s the case, why is it limited to just RRMS ?

Sorry, but I think Lemtrada’s effectiveness is being grossly exagerrated !!

Dom

exagerrated — EXAGGERATED …d’oh!!!

I’m not sure if I’ve misunderstood but it sounds like it could be a cure for some people with ms? Is that right? If so shouldn’t we all get the chance to have this new drug.

Sorry if I’ve misread

Hi Minnie, No, it’s not a cure - just another DMD - complete with the usual list of possible side effects - some serious. Tina

I think this is the one that works very well but only for people who are recently diagnosed. It also carries risks of giving you a very low platelet count - I think possibly the risk of this is as high as one in five (low platelet count means your internal blood clotting mechanism is kaput, which can be very serious). So it’s a bit more than just another DMD but it’s not a magical cure for most of us. If I had been diagnosed in the last year or two and was suffering badly, I would be beating a path to my neuro’s door for this.

I was DX a year ago, but don’t suffer badly. So prob not for me

I know someone who did the trial. She went from relapsing every three months to no relapses since her first blast of Lemtrada in December 2009 so no Liam, I don’t think it’s effectiveness is being exaggerated when I see her here, there and everywhere and I have no life pretty much right now. My (very basic) understanding of how it works is that it flushes out all your white blood cells (as it is also used in leukaemia treatment) and when the cells repopulate, they are no longer bad MS attacking cells. Your MS is stopped in its tracks but you are left with any residual damage you had. I am going to push as hard as I can for it when I see a new neurologist at Addenbrookes later this month. It is the closest thing to a cure right now. I’ve been diagnosed thirteen years bit still walking unaided and have only ever had sensory relapses. I really think this drug could still work for me. The lady I know who did the trial spoke to her neurologist recently about the NICE approval. Apparently, it was £1,200 plus in patient costs for the two treatments then - it’s now £56,000 plus costs. I can only think NICE have agreed this so quickly as they think it will save them money in the long run.

I was DX a year ago, but its only mild, I guess it won’t be for me

What happens after the 10th day of the course?

Why wouldn’t it be for you mm, discuss it with your neuro and find out

I also know someone who was on the trials and who had quite a few of the listed side effects. They still said they don’t regret it for a moment as they have had no relapses since having the infusions and the side effects were more manageable than relapses. Regular blood tests monitor for the more serious side effects and these are dealt with promptly. I’m now on my second DMD and if that fails, Lemtrada would be my chosen drug if I am given a choice. My neuro did offer to speak to the trial team for me previously but now it is licensed I would hope it would be readily available providing the patient fits the criteria. Tracey x

[quote=“Minnie_mouse”]

What happens after the 10th day of the course?

[/quote] My understanding is that it’s given for five days in year 1 and then for three days a year later. And then that’s it.

More information here: http://www.mssociety.org.uk/what-is-ms/treatments-and-therapies/licensed-disease-modifying-drugs/lemtrada

So is it September It is actually becoming available, I can run now I can walk but it takes it out of me and If this works as in stops relapses I’m wondering if I could be suitable for it. I have ms nurse this month may ask her about it X

Em it’s not available in Scotland yet. There is expected to be a decision about it later in the year so there’s no guarantee that it will even be approved here yet although it’s encouraging that NICE have approved it. I was at ms nurse Monday morning discussing the possibility of starting dmd’s and she reckoned it wouldn’t be offered to me anyway as it would probably be a second line treatment. I know you’ve already been offered a second line treatment so it may be an option for you if your willing to wait. I would have thought that if it’s approved you’re looking at early next year before it’s available. I’m hoping to maybe try Aubagio and avoid injections altogether but even this is so new they haven’t prescribed it to anyone yet so they haven’t worked out the logistics of the blood tests etc yet. Ann Marie

I got offered this on a trial at the end of last year and I turned it down and opted for tysabri instead. Yes the benefits of campath seem great but the side effects need to be seriously thought about as they aren’t minor side effects and when sitting down with the statistics of them it’s enough to make most people have second thoughts about it. Especially as one of the big side effects of it is kidney failure which has happened a lot more frequently - so not only do people have ms to deal with but also dialysis from where their kidney has failed and also an under active thyroid etc. So it might seem like the wonder drug but it all comes as a price and I’m not talking financially. Also it’s not a cure - it halts the ms but it doesn’t cure it and a few years later people have been known to have further attacks so as great as it seems it’s a very serious treatment and really not to be taken lightly so anyone that does get offered it please think carefully about it

Just wanted to say my earlier post was wrong. There is a low chance of getting low platelet count (ITP) and quite a high chance of getting problems with your thyroid.

[quote=“Emfraserburgh”] So is it September It is actually becoming available, I can run now I can walk but it takes it out of me and If this works as in stops relapses I’m wondering if I could be suitable for it. I have ms nurse this month may ask her about it X [/quote] It is actually being prescribed in some areas already on a “case by case” basis I believe. All that’s known so far criteria wise is that it’s for “active RRMS”.