Lemtrada: A couple years ago, my second... - My MSAA Community

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Lemtrada

IFwczs profile image
11 Replies

A couple years ago, my second opinion MS doctor mentioned Lemtrada to me. (That was before Ocrevus.)

I just saw that, like Ocrevus, Lemtrada kills B-cells and T-cells. What is the difference between the two (other than the price - Lemtrada is $300K a year)? Is Lemtrada supposed to slow down disability, like Ocrevus? I know some of our members are on Lemtrada.

Here is the article:

multiplesclerosisnewstoday....

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IFwczs
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Jesmcd2 profile image
Jesmcd2CommunityAmbassador

Good question IFwczs and MSAA has a chart that can explain that. Hope it helps. ☺️🤗💕

mymsaa.org/PDFs/Treatment_C...

J🌠☃️

IFwczs profile image
IFwczs in reply toJesmcd2

Thank you very much, this is helpful.

Juliew19673 profile image
Juliew19673

I know w/Ocrevus they charged my insurance $59K and that frightened me. My cost was $1050. I am scheduled 12/12 for my 2nd full dose of Ocrevus at a new facility and will be curious what the charge will be...

IFwczs profile image
IFwczs in reply toJuliew19673

Just remember that Genentech has financial assistance. You didn't have to pay $1050 (and your income is immaterial, you don't have to prove you need financial assistance).

sashaming1 profile image
sashaming1

I don't know how your Lemtrada gets paid for (or how mine was) so I won't comment on the cost - I may be afraid to learn the details. However, the infusion scenario for Lemtrada was that the 1st time: one infusion of Lemtrada per day for 5 days, 2nd time (and the last time if MS symptoms have been stopped or are not increasing) about 1 year after the first one: one infusion of Lemtrada per day for 3 days. I did not have any treatment side-effects (except a slight rash which was a minor, minor issue). No problems with the Lemtrada or the infusions. Sorry, I can't compare Lemtrada and Ocrevus.

IFwczs profile image
IFwczs in reply tosashaming1

Interesting, thank you. Did it stop your MS symptoms? I am on Ocrevus and am interested in Lemtrada.

sashaming1 profile image
sashaming1

Thankfully, not many symptoms to stop. So I can't tell. I've been stable for years with no new lesions for many years while using Tysabri. It was working fine for me until I had a positive JC Virus test result - which could have led to very bad side effects. So, since I had been on several different treatments previously, my Neurologist put me on Lemtrada.

kandykone1 profile image
kandykone1 in reply tosashaming1

How long were you on tysabri?

sashaming1 profile image
sashaming1 in reply tokandykone1

6 or 7 years until a positive JCV test result. No new lesions. Worked good. No adverse effects. Had previously used Copaxone & Plegridy. Eventually switched to Lemtrada. No new lesions.

kandykone1 profile image
kandykone1 in reply tosashaming1

So at any time

Anyone can test positive for JCV? I’m still learning about this.

sashaming1 profile image
sashaming1 in reply tokandykone1

Yes but unlikely. And, if that wasn't enough, there are false positives and negatives. So, the actual test result number (how much positive or negative) makes a difference too! So, a positive test result is not the final word. Its a concept that needs a Neurologist to decipher. Look it up on the internet to gain more knowledge.

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