I’m due in for my second round on the 23/5 so I’ll let you know how it goes. I’m going as an outpatient this time.
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Just giving this a wee bump as I’m very keen to know the answer! Hopefully due to get my first round treatment at Kings on 14 August so any and all advice much appreciated!
Also so very newly diagnosed - CIS in March and RRMS on 14 June. Very very grateful for speedy process and route to treatment
Don’t know why that’s anonymous - pob (the OP) posting.
Hi Pob
Iam really interested in your post, I was offered Lemtrada in March but then fell pregnant so have to wait until after baby.
I hope your 2nd round goes well (minus the steroids keeping you awake)
Thanks for sharing it really helps.
So second round of treatment finished. Day 2 followed same protocal as day 1 but without any side effects which was great. Day 3 I developed the itchy rash towards the end of the infusion so got more antihistamine. Still itchy today (day 4 so at home and finished treatment) but not too bad.
Apparently my platelets are low so have to go back for more bloods next week but all seems to have went smoothly - fingers crossed all works out in long term now.
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Really interesting post. How are you getting on after your last treatment?
I’m seriously considering Lemtrada - but the risks seems so scary!
Also, are steroids a MUST when having the Lemtrada? As I do not get on with them at all and refuse them at all costs 
so would really rather not have them if I can! Do you work and if so how much time did you have to take off? (I work in a hospital so assume I’d have to take a fair while off)
I’m currently on Techfidera and have been since March 15 - really struggle with the side effects of it and Lemtrada is the only other option for me that’s as good as (well, better!?). I’ve no idea what to do for the best really! I’m 25, relatively healthy (MS aside!!), no children but myself and my partner would love them not too far in the future. I work full time and try to lead an active lifestyle, although fatigue and bladder problems do get in the way. I used to be horrendously obese, so the thought of thyroid problems worries me as I know they can cause major weight issues etc.
Any feedback greatly received!
Thanks
L xx
I’m on techfidera as well and have a few flushing issues but like yourself I am fairly well (fingers crossed) MS aside,my neuro said that he would give me Lemtrada if he thought I needed it, but he thinks that my MS is fairly stable to be thinking along the lemtrada route, yet.
Good luck
Stephen
Hi L - haven’t been on here much but just did a search to see if anyone had asked questions on my old post.
I’m no medical expert but I imagine Lemtrada without steroids would be a worse experience than the steroids (I obviously have no insight into how they affect you but I quite enjoy the relief from various aches and pains that steroids give me).
I took about a week off work after the infusion both times round. This is at the low end and someone who was getting infused at the same time as me had planned up to 6 weeks off. My job is mostly office based but I probably should have taken more rest and I think someone with a more physically demanding job would need more time off.
I’m still doing pretty well. Had some mild symptoms recently but they have passed and were probably due to over exerting myself and getting run down. I’ve just re-read ‘Davids campath story’ to reassure myself that these symptoms don’t mean anything sinister and its worked. So far all my monthly blood and urine tests have been clear (although my neuro says it can take a number of years for significant side effects appear) so am still happy with my decision.
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I recently travelled abroad to receive infusions of Alumzatab (Made by Lamtrada), the way they do their procedure was very well organised and controlled. I received 4 x 60ml tubes a day in conjunction with 4.5 litres of saline flush.
I was in hospital for 5 and a half days. Upon release i still had to wear a surgical mask for protection as all we have at that point is our baby immune system but that was not a hard ask. I maintained that for 2 weeks post treatment and rested for the 3rd week back to work on the 4th week.
However i did not start my normal full 60 hour working week until week 7 post treatment.
I also came home with a bag full of supplements recommended by the haematologist that has perfected this treatment, he worked with a Professor that was instrumental in HSCT but seen the effects in later years and wanted to help people with a kinder, softer option for the body, but no less effective.
I must say I am now day 105 and have far more energy than i did as the MRI done Pre treatment showed the MS had turned progressive, and i have more feeling in my feet and hands, which is amazing (but not when you step on something sharp), the tiredness i do feel may be attributed to my heavy work schedule but new MRI is due in March, so that will tell.
My mind is working quicker, i have so many ideas my family can’t keep up haha. I am so grateful and feel blessed to have be put in touch with these people, i was getting nowhere in the UK and felt they preferred me to stay ill, i know that sounds harsh but i didn’t want to be on injections or medication, i was once active and working, then i crumbled, unable to work, that’s all i knew what to do, everything was taken from me, i was so low at that point but i know cliche moment, i was a miracle.
I’m working, paying off my debts that i accumulated as had to live off credit cards to pay rent and bills. New job (ok still 60 hrs) but i’m kinda the boss so I’ll work on getting those hours in time.
The best thing it gave me was hope, especially when i met the lady in the next room, she was there because her parents heard of a woman in the next town that had had this treatment last September, at that time she was living with her parents as they had to care for her, she was wheelchair bound and had lost sensation completely down her right side, so they went to visit her to ask if it was worth sending their daughter (as there is a cost, no nhs), they went to the parents house only to be told that their daughter wasn’t there, she lived in her own place 10 mins away, so off they went once more and was greeted at the gate by the woman herself standing proud, No wheelchair and has use of her right side, not full sensation but at least 55%, enough for her to be able to once again live in her own home and care for herself. That’s why the lady in the next room was there, her parents didn’t need anymore convincing, and i new at that point I’d definitely done the right thing.
This treatment was not cheap but as expensive as HSCT however I honestly can’t tell you in words what I’ve got back, except to say My Life. I am having a top up treatment next year but I’m looking forward to it.
It’s still early day’s and i’m impatient so i can’t wait for everything to be fixed but i am also realistic. I am getting quite a few headaches, but the stress at the moment is high, as other half has early xmas pressie… Redundancy, through all the debts I literally cannot afford a single gift unless i crack out the credit cards again (I know i’m gonna).
Seriously though i would recommend this to anyone, i cannot attest to the treatment here in the UK only as to where i was treated and it was second to none
This country is leading the way in HSCT i just hope the get to do the same with Alumzatab.
Hello Pob,
I’m across the water in the US, and want to know how you’ve been doing after your course of Lemtrada.
I was diagnosed back in 2000, and have gone through the usual treatments (copaxone, interferons, Tysabri, now Gilenya.) My neurologist is pushing me towards Ocrevus, but it’s only been a few weeks since it was approved so no real history.
I’ve been following your posts regarding your lemtrada experience. My symptoms are more cognitive than physical, but my endurance and fatigue levels have both been affected. I’m heartened by the stories I’ve read from those who’ve really benefited from taking Lemtrada and trying to arm myself with as much info as possible.
Thanks!
Hi Everyone, 
I am new to this forum and have recently registered to MS society. Newbie.
I was setto start lemtrada this Sunday - however i got a missed call and voicemail from my specialist nurse when i was at work confirming they will have to delay it. She said to email her with a time that is best for me as she wants a chat. I am now panicking and cant speak to her till tomorrow as she is not working till then.
Can anyone let me know on the reason on why it has been delayed. She did say my results from my pre tests will come back a few days before sunday which im assuming has now all come back.
What could it be? has anyone had previous experience with regards to this.
Please reply
thank you xx
Hi Rebecca
I can’t help, but thought maybe you could ask the same question on https://shift.ms/ as their forum has a lot of people on Lemtrada.
Sue
Hallo to you fellow M. S. People,
I have had M. S. for 35 years and have gone through Betaseron, Copaxone and am presently on Gilenya and, touch wood have experienced very few side affects and am interested in Lemtrada and before I ask my Neuro, I’d like to ask those who are now taking it, a few questions.
-
How long is it, between the infusions?
-
After the first Infusion, are the second, third, etc infusion the same duration?
Many thanks,
Tom
There’s a bit about Lemtrada/Alemtuzumab on the Barts MS Blog. A year between the first and second infusion courses. The first infusion course is over five consecutive days. The second infusion course is over three consecutive days.
A third infusion course has not yet been agreed by NICE. Currently, if pwMS continue to relapse then they start to take an alternative DMT.
It’s an unfortunate situation as Prof G of the Blog states "This situation has also put me in an awkward position as I have counselled most of my patients that about 40-50% of them will need a 3rd course. "
http://multiple-sclerosis-research.blogspot.com/2017/07/neurospeak-clinicspeak-nhs-england-has.html
However looking at it the other way, this could mean about 50-60% of patients will not need a third infusion course and their MS is stable.
There is also a lemtrada group on Facebook.
I had no idea that so many people would need either a 3rd series of infusions or a different DMD post Lemtrada. It makes the risks associated with it more of a gamble. I’ve always thought of DMDs as being a risk versus benefits. And to this point, I thought the risks associated with Lemtrada as being acceptable given the benefits. But if a sizeable proportion of people continue to relapse after two rounds of treatment, then the risks are higher than previously thought. What an absolute bugger. NICE seem to be so backward in terms of cost effectiveness. I’m truly sorry for those people who need a third round of Lemtrada and can’t get it.
Sue
Before I took Lem I wanted to know what my options would be if the Lem failed. I’ve done a bit of reading into this and spoke to both my neuro and MS nurse. My understanding is that whilst the NICE/NHS licence is only for two rounds, it is possible for a third round to be prescribed off label/on compassionate grounds. In addition, failure on lem does mean that you potentially become eligible for HSCT in the UK under the compassionate programme / trial (one of the criteria for this is failure on either Lem or Tysabri).
This is supported anecdotally from the people on the Lemtrada facebook forum (a number of whom have had multiple doses; there is one lady who has relapsed post R2 and is being considered for HSCT)
It also seems possible that Ocrevus or Cladribine could be used - and that Tysabri woud dalso be an option (albeit one with a slightly higher PML risk due to the comrpomised immune system)
I was told that a good neuro wont give up - certainly not whilst someone is RRMS. That is my hope.
Katy xxx
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Katy
You are the super smart poster girl for Lemtrada. Whenever anyone asks questions about it I suggest they look for your posts. You are fabulously well informed and I’m sure your doctors appreciate your knowledge and understanding of the drug you’re taking, it’s risks and benefits.
We should all do as much research.
Sue x
May be I have misunderstood but when Prof G wrote on the Blog the following, I understand it as it would be difficult to get the 3rd course of Lemtrada on compassionate grounds in England?
" Not being able to offer a 3rd course is a problem in that an IFR (individual funding request) will not be processed as there will be more than 20 patients in England eligible for a third course. "
I still think it’s worth trying Lemtrada though as a DMT. May be pwMS living in Wales or Scotland have better access to the 3rd course of Lemtrada on compassionate grounds?
Katy, do you know, if the people you mention on Facebook who have had more than two Lemtrada courses live in England? (and not as a clinical trial).
I have been aware of having MS since 2011, after every attack I had solumedrol infusions and was very fortunate to go back to “baseline” (from what I have been told). I have done Copaxone and Betaseron so far. I almost tried Tecfidera but I read horrific reviews and was too scared to try it. I am going to see a doctor that has had a number of people on Lemtrada, however I have been afraid of side effects, plus the fact that I haven’t really had any serious MS related “drawbacks” as of yet. My recent MRI showed a lesion on my brain stem so the doctors are wanting to try a more aggressive drug. I have felt very tired, achy, several nights of fitful sleep, if any real sleep, and since being on Betaseron I have experienced this strange reaction to being touched (I flinch and realize that I don’t want anyone touching me, even my kids!) After several months of having to psyche myself up for hugs and affection with my husband, I just decided to stop taking all drugs. I have been off all medication now for over a week. My mother is worried that this is not good. I appreciate any insights. Thanks