Hi everyone I am in a little predicament, so I put myself forward for this trial (proximus) which is due to begin. However I have come across this new drug (Alemtazumab) which looks quite interesting. I have had ms from 2009, well diagnosed, and have been getting progressively worse. Unfortunately no medicine has worked for me. Now I have come across this drug and I am anxious to try it rather than go on this trial which includes 4! Yes 4! Lumber punctures. I would like to hear some thoughts regarding this? Maybe people who have tried Alemtazumab and recommendations please. I will be consulting with a doctor about this on Monday too but I believe nhs doctors always look out for themselves
hi dan
alemtuzumab is not a new drug but has just been passed by NICE.
i have only heard good things about it.
i asked if i could have it but my neuro thought i was too old!! cheeky b***ger.
it is also known as campath and lemtrada.
it is given by infusion requiring an hospital stay.
you will have your platelets monitored.
good luck
ps i googled proximus and came up with a mobile phone!
As Pigpen states, it’s not new, it was approved by NICE last year. I know someone who was on the original trial for it and she went from relapsing every three months to none since her first infusion of it in 2009.
It’s been used to treat leukaemia. My (very basic) understanding of it is that it kills all your white blood cells and then when they repopulate, they’re not bad nasty attacking MS cells anymore.
It’s given via two infusions a year apart. And that’s it. It’s expensive though - I was gobsmacked NICE approved it but it is a real game changer.
All I will say is you have to be in a pretty bad way to get it - highly active/rapidly evolving RR MS. And one of the potential side effects is death (as put very bluntly to me by a neuro I saw at Addenbrookes who turned me down for it) and potential thyroid problems.
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Oh and there’s no point speaking to your GP about it - it has to be approved by a neurologist.
I am currently on tysabri , for the last 10 months , having the last infusion this Friday, as neuro says it’s not working for me.
am due to have campath on 23 rd march, yes it has risks, but I have highly active RRMS and I have to do everything to try and stop it,
so sooner the better,
I have just had my first yearly dose of Lemtrada i was treated as an in patient for 5 days. The general way things work is you will be given steroids along with the Lemtrada for the first 3 days then just the Lemtrada for the final 2 days. Obs are carried out every half an hour to start. One of the known side effects is a rash which i had quite bad which meant i was given steroids for the 5 days, shortness of breath is also one of the side effects i suffered but this was easily resolved with a nebuliser. When i first returned home after the infusion i felt awful and was starting to wonder if i had made the right decision but, I am now 3 days post infusion and starting to feel more like my old self, i even managed to wash up today without help or having to sit down in between(big improvement for me). I would say that it is something that needs careful consideration as although the infusions are only once a year there are monthly blood and urine tests which must be carried out. I chose to go for it as i felt i had no other option, I was diagnosed Sept 2012 i have been on Rebif and Gilenya neither of which worked for me, my neuro recommended Lemtrada and kind of said that it would give me a rest from the MS for a while, so that’s what i based my choice on. It’s a big decision and needs serious consideration, feel free to ask my anything if you think it will help.
I hope it works for you Gray. I remember your story well. Take care
Tracey x
I’m currently on Gilenya after Rebif stopped working for me. My neuro would’ve put me forward for Lemtrada (which was still known as Campath and still in trial stages at the time) but I didn’t feel my MS was that aggressive at the time. However if Gilenya stops working for me then I would definitely consider Lemtrada as it seems less of a bind than the monthly Tysabri infusions. I know of a couple of patients that were on the trial and it turned their life around. I’ve been on Gilenya for a year and so far so good so hopefully I’ve got many more years before I have to consider it
Tracey x