Last reply 8 months ago
Has Lemtrada worked for you?

Hi
Had Lemtrada R1 2 months ago and having what I think is a relapse.
Saw the doc and my lymphocytes have bounced back to normal over the two months which according to him isn’t brilliant.
Got an MRI on Tuesday so obviously don’t know the outcome yet, but was wondering if Lem didn’t work for anyone else and what their lymphocyte levels were?

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matic91
1 year ago

my second dose of lemtrada kind of didnt work or didnt have the wanted effect. about my lymphocyte levels i dont know much and my neurologist also didnt talk about them.


Anonymous
1 year ago

matic91 so dis you have a third round or have you decided against it?


matic91
1 year ago

i still wait for the effect of the second dose to come. I cant have a third round till i get a great relapse.


gates1989
1 year ago

@d-Hartie, wait until the 2nd dose, they make us have 2 rounds for a reason, please don’t give up hope! X


sinead
1 year ago

Hello – I’m afraid to say that a small population of us who have Lemtrada are unfortunately called “re-populators”, which I believe means that our lymphocytes do not stay suppressed and as such means that the therapy wont be successful in preventing the white blood cells from mounting further attacks. I had a very good recovery following my first course of Lemtrada and completely believed that it was due to the drug working super well, however after a relapse following my second round it was noted that my cells were never suppressed to a level low enough to prevent a relapse and that I was just going through a good period of recovery. It’s unfortunate, but the sooner they realise the sooner you can be switched to another drug (Tysabri in my case) to help protect you. I was told after requesting it that there’s not much point in having a third round if your body doesn’t respond to the alemtuzumab in the desired way. I hope you find something that suits you and stay well 🙂


Anonymous
1 year ago

@gates1989 not given up hope yet 😊 will see after the MRI. But will talk round two over if what @sinead said is the same as me I’m not sure I want too go through all that again if its not going to work and if I’m having a relapse so soon after it must be pretty active right? So just wanna nip it in the bud with something else


louise33
1 year ago

Hi @sinead. Can you have an alternative treatment quite soon after having lemtrada then?


sinead
1 year ago

Hi louise, they switched me to Tysabri around the same time that I would have been due a third infusion round (so a year after having lemtrada). Still not sure if it is now progressive or just more relapses, but haven’t had any new symptoms since starting on Tysabri, touch wood 🙂


crashtestdummy
9 months ago

HI everyone, I had Lemtrada in late August last year R1. Apart from getting pneumonia afterwards, I would say it has been amazing. I have been more heat tolerant (ok, so not on the couch begging for water when its over 26Celcius like I used to – but still confined to the house when its warm) I can walk HEAPS better. upto 2km without a stick, whereas I was struggling at times to walk the house with a frame. I still have a lot of symptoms, numb feet, numbish right side, pins and needles, buzzing, myoclonus seizures, numb thumb (also known as knife throwing..) fatigue but not so bad as before, and I can climb up steps now. I am nervous about r2 because I have a sustained low lymphocyte level of 0.6 – can’t get a subset breakdown from my specialist, which means I am still on famcyclovir and having the occasional mild shingle outbreak. (I am worried about having a mass shingle attack with R2). Overall it has been really good for me. I still am not working, but I am getting heaps more done around the house than before which is nice. I doubt I could be reliable enough to hold down a job. Anyway, we shall see. I am very happy, and thankful to God for everything I can actually do.


crashtestdummy
9 months ago

And I forgot to say that my MRI last week 6 months post was NEDA woo hoo!! (No evidence of disease activity) – VERY unusual for me. I have extensive spinal and brain disease on MRI – its everywhere!


sciencegeek
9 months ago

Hi,

Have a read of this paper, which explains the way that the different types of lymphocytes repopulate after Lemtrada (alemtuzumab) and cladribine:

http://nn.neurology.org/content/4/4/e360.short

B cells are typically at or above starting levels 10 weeks after having Lemtrada, and then overshoot until the next dose at 52 weeks. The cycle then repeats again. B cell counts can be upto 150%-200% of the original level by week 100.

T cells typically stay down for the entire 2 years and beyond, and don’t seem to recover to more than 30%-50% of the original levels ever.

You could ask your specialist for a full lymphocyte count to see the breakdown of different types.


stumbler
9 months ago

@crashtestdummy , I can understand you being apprehensive due to the possibility of further infections, but isn’t there also the risk of the MS returning if you avoid round 2.

Round 2 is part of the protocol for a reason.

Good luck with it, I hope it goes well for you.


sherryak
8 months ago

Thank you @sciencegeek for the link to the article. I haven’t read it yet, but plan to now.

I had 5 days of infusions August 2016 & then 3 days of infusions August 2017. You’all have talked about Round 3; so I have another week of infusions in my future? Lemtrada wasn’t approved in the United States until a few years back, so I’ve been wondering about what will happen next & when.

I saw Tysabri mentioned here. I’m JC virus positive now or I’d still be doing the monthly infusions. I loved Tysabri. It was wonderful to get to take a 2-hour nap during work hours. But those days are gone & now I just get to enjoy (endure) monthly blood work & urine tests. But then I read in this email chain about a Round 3 of infusions; so now I’m wondering…


stumbler
8 months ago

@sherryak , the protocol for Lemtrada is two sets of infusions, a year apart.

There is an option for a third set, if it is considered to be required. But, in the main, two sets are sufficient.


sherryak
8 months ago

THANK YOU, @stumbler! I was starting to worry that Round 3 was part of the norm. Whew. I appreciate the info!!!!!!!!

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