@Southern

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Southern

New Treatment

I have just be offered to have Lemtrada just wondered if any one has had this treatment and what do they think about it.

norfolkgal

@norfolkgal

Hi @southern, I was just going to look for Lemtrada related chat on here. I am now 2 weeks post round 1 of Lemtrada. I started on 5th of June and it went well. I did not really get much of the definite rash at day 3 and when I did at day 4 it cleared quickly. They was doing I.V paracetamol and Piriton first and last each day though so that probably helped with side effects. Now 2 weeks later I am only finding I am still really tired. When I feel okay I do something and I don;t manage much before being super tired again. I joined a really good group on Facebook for others considering and having this treatment and am finding that really helpful. I have also found many blogs to read and watch from those who have had treatment that are helpful too. I am happy to share links for them but not sure on posting links direct here. Good luck with your decision on this.

Matic91

@Matic91

I started with Lemtrada in 2015 and had my second dose last year. It is a very powerful and effective drug, although the second dose in my case didnt have the same positive effect as the first one, but hey we are all different so i believe and hope that youll have more luck with both doses. good luck and stay positive

TracyD

@TracyD

@southern First things first ..... it's the rolls royce of treatments, the best chance as a newly diagnosed that I had of stoppping MS dead in it's tracks and taking my life back. I've had both rounds I'm now 'year 3' .... disease free, treatment free and happy as a happy thing Because some lovely people were happy to document their journey and talk to me when I was asking the questions about Lemtrada I chose to do the same, so here it is ... the last 2 and a bit years of my life, lem and everything - the strange ramblings of a 40 something bird with a slightly strange life, too many pets and I happen to have MS :-) My blog details from 33 days before my Lemtrada start date and through the whole journey so far. Please take a read at: http://www.tracyslemtradajourney.co.uk Year 1 of the blog is also available on Amazon as an easy to read eBook for £1.99 with all proceeds coming directly here to the nice people at SHIFTMS as it’s a registered charity. https://www.amazon.co.uk/dp/B01GE1V00M

EdgarLeroy

@EdgarLeroy

It's probably the most effective drug for MS and offers a great chance to stop the disease. But there are risks. Besides the immediate infusion reactions, there's a chance of autoimmune diseases developing down the road a few months. See here: https://shift.ms/forums/topic/lemtrada-woes You may also develop neutralizing antibodies that may diminish the effect of the drug for the 2nd year infusions.

vasy

@vasy

I had this treatment in 2014 and 2015. My MRI is stable since then. Hi @norfolkgal Your tiredness will soon resolve.

KatieLondon

@KatieLondon

@vasy I was just offered this treatment too costs over €50,000 here in Germany any chance your insurance company paid for it?

webbexpress

@webbexpress

I'm just trying to decide. Met my nurse yesterday and it's pretty much Avonnex or Lemtrada. (Plegridy did not agree with me) Thanks for posting @tracyd , I'll have a read! :-) Ben

Southern

@Southern

Thank you for your comments think I'm going for it but I'm a bit nervous x

vasy

@vasy

Hi @katielondon Unfortunately, I don't know. I myself live in russia and had to pay for it in cash.

aimee31

@aimee31

I'm starting this in a few weeks nice to hear good things x

Cee79

@Cee79

hi all! so luck to live in a country that has a national health service! and long may it live in future governments to come! I was diagnosed with MS in NOV 2013, I think I took about a year to decide to go on to DMD. started on avonex (shudder) 1.5 years, went on to fingolamod for a year as started hating injecting my self and the side effects that followed days after. I stayed on fingalomod for a year then went 1 year without meds as I wanted to conceive, which didn't happen, hey ho, went to to tysabri, dispite being tested high for JC virus, on it for just over a year, still had active lesions, offered 2 treatments, lemtrada and stem cell, went for the lesser of 2 evils. had my first infusions beginning of march 2017, so now 3.5 months into it, not worked since infusion, not in a fit state to yet, I have my fingers crossed that a day will come when I feel better, I had no adverse reactions to the infusions and didn't even develop the rash, the treatment its self I found pretty hard going, a pretty much following the treatment/ infusion, I felt like I had been 'hit by a bus' which did knock me for six, but lucky I was in hospital, and had a hospital bed to veg out on!!!, once discharged, it felt like I had had a frontal lobe lobotomy (no that I've ever had one), as it felt like a part of my brain was missing, it was hard to function, think, decide, movement was limited, to even converse was also difficult. this probably was present for 1.5 to weeks after, started to feel a little human again, little by little. my biggest thing is this feeling of drunkenness/intoxication, which I had slightly occasionally before treatment and following treatment has just really exacerbated it and am experiencing it on a daily basis which is totally effecting my whole being. everybody is different, and I think everyones reaction, and recovery is also different, there is no.....'well it should take you so many months to feel better and so many months until normal life will resume.... you just have to ride the wave. but am still keeping faith, that this should put an end to the MS, fingers crossed........

abbie1995

@abbie1995

@southern I too have recently been offered Lemtrada. In the end, I turned this down and have opted for Tysabri instead. I can see that you have been on Tecfidera (I have also), this just didn't work for me unfortunately. Anyway, I thought it might be useful to share my reasons for this decision... Reasons why I decided not go with Lemtrada: - Irreversible effects on the immune system - Can cause other autoimmune diseases (also for life) - If it doesn't work, I have to wait a year to try an alternative (they wont give you 2 DMTs at the same time as DMTs often interact) - Lemtrada is in its infancy, the full picture is not yet known at least when compared to Tysabri - Tysabri also has equally good statistics The decider for me was: - Why potentially cause myself more incurable diseases by taking medication that I know isnt going to cure my current disease. Whatever your decision, wishing you the best of luck. :)