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My doc yesterday advised me to try Lemtrada, this is after two drugs have failed on me already, one is Interferon beta-1b and Aubagio(currently on) it would have been a very simple choice if I had insurance but I don’t so i have to pay for it myself, second is the side effects. I need feedback from people here who have used it!! if the outcome outweighs the cost than its a GO!! Please help

October 24, 2016
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A MyMSTeam Member

You will not have to pay anything out of pocket. There are numerous financial assistance programs that will assist to cover any and all costs. The side effects are no different than any other drug, just happened at a higher rate, so docs have to stress them. All of the current known side effects are catchable in the monthly labs and effectively treatable. Having the monthly lab work, I think makes Lem a safer drug than any other. I'm 2 weeks post round 2. I had no infusion reactions during either infusion and really no problems after. I started back working out with my trainer 6 days after infusion because I feel that good. I honestly never thought twice about doing it.

October 25, 2016
A MyMSTeam Member

I'm 14 months post round 2 (essentially means I finished over a year ago). I've had no side effects and saw my neuro yesterday. Latest MRI showed no new or active lesions on my brain or spine. It's made me stronger, except for a hip flexor issue which can't be prevented with meds. And my fatigue is gone.

March 14, 2017
A MyMSTeam Member

@A MyMSTeam Member the first Lemtrada re-set is a little hard on the body, so make sure you rest up after during and a few days after!

April 9, 2018
A MyMSTeam Member

@Prusell I am so sorry i just saw your message here! By the Grace of Allah Lemtrada has been a mircle drug for me never felt better since my diagnoses in 2015, I am slowly getting back to the things I loved doing but still very careful of not pushing my body to much.. ohh i had my round 2 in dec last year !

April 5, 2018
A MyMSTeam Member

Jumping through the hoops now to start Lemtrada next month. I've been on Avonex and Tecfidera.....No change on recent MRI, but disability is progressing. Hope to "re-set" my immune system and halt disability for several years. I just can't commit to Tysabri (risk of PML) - also Lemtrada is a little more aggressive in some respects..... I'm not getting any younger, maybe I can get into my 50's and my immune system will slow it's self down.

October 13, 2017

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