Is Lemtrada Safe????

[KO4BG]

Hello my wife has MS and been on everything there is, had to stop most because of recations, Tysabri because she tested Positive for JVC, and danger of PML, now on TECFIDERA, with not much results at all. Doc (in Cullman, Ala) wants her to start on Lemtrada the end of this month. I talked to one of the infusion nurses and was told it was Chemo X3 said they wouldn't give it to their dog because of side effects and greater chance of PML even then Ty. said there was nothing to do if bad reactions and they did not know the results past 5 yrs.

I talked to the Lemtrada Rep. last week and ask if it was Chemo, she wouldn't tell me one way or the other just beat around the bush as we Southern's say, but never gave me a straight answer!! Don't really know what to do, MS Doc told my Daughter when she ask about her Mom that there were NO side effects I guess he hasn't read the Info that they send out with this stuff. Sure makes me wonder and don't know what to do, this is our last chance, and my wife is either in bed or wheel chair most all of the time, drained from the once Vibrant person she was to now not being able to do anything for her self and taken so many falls it hurts me to even think about them, we spent Easter Sunrise in the ER from a fall, face first from commode onto ceramic tile floor.
Take Care
Woody

[jratterman]

Hello my wife has MS and been on everything there is, had to stop most because of recations, Tysabri because she tested Positive for JVC, and danger of PML, now on TECFIDERA, with not much results at all. Doc (in Cullman, Ala) wants her to start on Lemtrada the end of this month. I talked to one of the infusion nurses and was told it was Chemo X3 said they wouldn't give it to their dog because of side effects and greater chance of PML even then Ty. said there was nothing to do if bad reactions and they did not know the results past 5 yrs.

I talked to the Lemtrada Rep. last week and ask if it was Chemo, she wouldn't tell me one way or the other just beat around the bush as we Southern's say, but never gave me a straight answer!! Don't really know what to do, MS Doc told my Daughter when she ask about her Mom that there were NO side effects I guess he hasn't read the Info that they send out with this stuff. Sure makes me wonder and don't know what to do, this is our last chance, and my wife is either in bed or wheel chair most all of the time, drained from the once Vibrant person she was to now not being able to do anything for her self and taken so many falls it hurts me to even think about them, we spent Easter Sunrise in the ER from a fall, face first from commode onto ceramic tile floor.
Take Care
Woody

It is a monoclonal antibody that binds to CD52, a protein present on the surface of mature lymphocytes, but not on the stem cells from which these lymphocytes are derived. After treatment with alemtuzumab, these CD52-bearing lymphocytes are targeted for destruction.

Lemtrada is not marketed as chemo but Alemtuzumab when it was Campath was, so the sales rep was in a awkward situation.

The best analogy I have heard is it reboots your immune system from the stem cells and hopefully not remembering the MS component.

If your wife is in bed or wheel chair most all of the time and suffers from falls, Lemtrada may or may not help with your wife's MS but doing nothing has a documented outcome beyond 5 years just ask the infusion nurse about the other drugs she has given to progressive patients.

The PML case appeared to be cared over from Tysabri in which the number is over 541 so I doubt that the risk is greater then Tysabri

In your daughters conversation with the doctor stating no side effects, I am hoping that was a miscommunication. You should talk to Dr. Chris LaGanke with North Central Neurology Associates
they are in Cullman, Ala.


I hope she has improvement whatever choice you make keep us posted.

[spacedive]

I am not a doctor, but I've been on Lemtrada since 2008. It's been the best choice I've ever made. All my lesions in my head and neck remain non-active and I have profound happiness.

P.S. I'm near St. Louis, Mo, U.S.A.
-spacedive

[montanagirl10]

I just finished my first year of Lemtrada infusions. You need to talk to wife's neurologist and determine if Lemtrada would be the best drug for her. Also, visit the lemtradarems.com site and learn about the side effects with Lemtrada. Although there are risks with any ms drug, the risk is worth the reward for me. Tysabri was no longer an option and all other dmds did not stop me relapsing. The potential for at least 5 relapse free years was worth it for me.

[DXB]

What you perceive as safe is relative , Lemtrada does come with well known benefits and risks and its all about the benefit vs risk ..

Benefits :

High reduction in relapses its categorized as highly effective
The only drug that showed EDSS improvements in as far as I know..
Induction therapy: 2 years and hopefully long term remission is possible
Dosing and administration : No daily injections etc

Risks:

~30 % Thyroid autoimmunity screened for and treatable
~1% ITP , a serious auto immune condition where the immune system attacks blood platelets , can be treated if detected early
Infusion reactions : common but mitigated using steroids and paracetamol during infusion
Increase in infection risk : I think they prescribe anti viral drugs for some time to mitigate this risk
Good-pasture syndrome : a very rare but very serious Autoimmune attack against the kidneys. MUST be treated immediately..

Lemtrda is an effective drug but it is also a risky one , therefore following the mitigation plan and the monthly check ups to detect and treat the side effects is very important. Luckily its most common side effect (thyroid issues) is easily treated and can be detected early with proper check up.

I advise you to read further , that nurse is totally irresponsible/misinformed ! If I were her with worsening MS I would give Lemtarda a shot , but as I am stable on Gilenya I'm sticking to it for now !

Best of luck !