challf 03/04/17
Last reply 1 year ago
New treatment

I have been offered new treatment Alemtuzumab (Lemtrada) Andy just want to hear from people who
are on the same treatment how are they going on. I was diagnosed with relapse remitting multiple sclerosis in 2008. I have been on interferon and currently Gilenya but seems not to work for as MRI scan
shows more damage to the brain. I’m recovering from a relapse and still have symptoms of weak muscles in both legs and pain to my left side of head affecting left side of face. I was prescribed carbamazepine to manage the pain but l don’t see any change. I’m still able-bodied, and your feedback will help me to make a decision regarding the new treatment.

Add categories

Browse categories and add by clicking on them

You can remove current categories below by clicking the ‘x’.


daniel2025
1 year ago

Treatment choice is very personal to the person I could tell you why I accepted it but none of my reasons may not apply to yourself.


challf
1 year ago

Sorry typing error, l meant to say anyone on lemtrada how are you getting on with the treatment? Is it something you will recommend?


daniel2025
1 year ago

Yes definitely recommended. Its obviously not a cure as that don’t exist but this treatments purpose is relapse reduction which it’s damn good at. My last relapse was 2016 in January or November 2015 depending on who you ask as my ms nurse and ms doctor have not been able to agree as I had symptoms in both times. I can confirm I had course 1 February 2016 and been relapse free since. It was really active before the treatment.

It don’t always work straight away and some in the drugs trials had to have extra courses there is a recovery period as you can imagine there is also some reactions you can get during the infusion. Its also a given you will get a rash for a bit but in despite of all of a this I say it was worth doing.

Short term issues for long term gain. This drug is very pricey so make sure you want it because it’s not good to have it everything planned and you say no more during day 1.

It can give you headaches like mad during the infusion make sure you drink loads during the infusion as it helps.

Yes you may get some or all the reactions but most stop after the infusion. Some take a bit longer. In the long run if your been recommended for this drug it’s because your neurologist recommended it based on your history.

If you don’t get it you will regret it as you could get worse disabled if you relapse.

It won’t be easy but in the long eun


daniel2025
1 year ago

That should say it won’t be easy but its worth it in the long run. The best thing you can do is accept all help you can to slow your ms down. Fight back.


gates1989
1 year ago

I had round one in January this year, between October 2016 – January 2017 (the week I went in for treatment) I had 3 relapses. Touch wood I haven’t had one since, I recovered from the one in January and seem to just be getting better and better! 👌I got the rash but with an antihistamine injection it went away (and gave me a great nights sleep!) and I had a headache on the first day, but I drank my own body weight in water each day I was there and I didn’t have another one x


tracyd
1 year ago

@challf
I’m now 10 months post round 2 of Lemtrada – unless I ever relapse again – well until then I’m done with this MS nonsense.
My story with Lemtrada is a published on on an online blog which has been going since 33 days before I started Lemtrada and was last updated yesterday with my Month 10 Blood results.

http://www.tracyslemtradajourney.co.uk

Year one is also in a far easier to read format on Amazon for £1.99 which all comes here (after the amazon vultures take a little) directly to Shift MS as it’s a charity.

https://www.amazon.co.uk/dp/B01GE1V00M

You have a friend request, I’m happy to share contact details if you want to talk about Lem or just put the world to rights xx


challf
1 year ago

Thanks for all your feeds, it has really put my mind at rest. Reading the facts sheet it sound scary, best to hear it straight from the horse’s mouth.


tracyd
1 year ago

@challf
My experience with Lemtrada has been fantastic, it’s given me back the life I had before my legs and eyes started to stop working and my brain turned into a soggy wet mess that made me sound like a moron.
I recorded everything as it happened so it’s there as a reminder of how far I’ve come, but also so if it affected ‘how’ I lived that was there too – the upshot of it really is that things only got better (apart from my hygiene OCD which may have gotten considerably more hyper – LOL)


challf
1 year ago

@tracyd
Thanks ever so much. What’s the process like, roughly how long is the waiting list. I saw my neurologist on the 27.3.17 that’s when he gave me the info about the lem and he said he will see me again in 2 months where l can let him know of my decision.


tracyd
1 year ago

@challf
I had my treatment at Southampton round 1 started May 18th 2015 and round 2 was exactly a year later. I was confirmed as approved in about March so it was a couple of months I guess. The process is fully published on the blog / book with the timeline and how it felt (right down to celebrating the arrival of Lem-rash and the expected headache 😀)
It also gives details of other things to expect because of the IV steroids and antivirals so it’s pretty detailed xxx


tracyd
1 year ago

This should help you find the right bit in the blog (hopefully) I went in on May 18th
http://tracyslemtradajourney.blogspot.co.uk/2015/05/


lilbird
1 year ago

Hi there @challf

I spent a LOT of time reading about ms & treatment after my diagnosis (mid 2015) This site was frankly invaluable! If you use the search feature to look for lemtrada it’ll keep you in reading material for a good while ☺

I’d definitely recommend @tracyd‘s blog which gives you a total blow by blow of the whole experience with her fab sense of humour so it’s uplifting & entertaining as well as being informative! Also Bart’s blog was another great source of info.

Lemtrada is the first & only treatment I’ve had & is going well (r2 due imminently) To me it seemed like the only treatment that could offer something truly positive, all the others felt like they were only offering postponement of symptoms. This is just my thought process & doesnt necessarilly hold any other merit.

I think aside from the reassurance of seeing so many people on this site who had or were about to try it the deciding factor for me it was the phrase “Time is brain” that struck me most & once I’d weighed up the scary potential side effects of Lem against the scary potential effects of Ms (with or without other potential treatments) it seemed like a no brainer – no pun intended.

Obviously only you know what’s right for you & all we can do is advise & answer questions so feel free to ask away as they occur to you. I can tell you that despite the tough desicion & the nerves & doubts leading up to round 1 I found the actual infusion experience really uplifting. I can’t really explain it & it seemed odd to me at the time but it was for me a very positive process.

Best of luck with whatever you decide, you know where we are if you need us 😉

Post Comment

You must be logged in to reply to this topic.