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  #1  
Old 06-30-2017, 01:19 AM
SAW SAW is offline
Optimistic Misfit
 
Join Date: Jun 2015
Posts: 11
Default Alemtuzumab (Lemtrada) Treatment Experience - Asking for Feedback

We are hoping that someone can share their experience with Lemtrada. Our sonís doctor has recommended he switch from Rituxan to Lemtrada infusions for his active MS. He is deliberating, namely due to the side effects of the Lemtrada treatment.

Thanks in advance for any feedback you can provide.

SAW

Last edited by SAW; 07-01-2017 at 04:14 AM. Reason: Edited Title
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  #2  
Old 06-30-2017, 04:35 PM
Suebee Suebee is offline
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Join Date: Mar 2015
Location: Houston, TX
Posts: 471
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Here is a link to a doctor comparison of natalizumab or alemtuzumab . It is 3 years old so I don't know if some data has changed, but the chart is great because it gives an understandable outline of benefits and drawbacks.

http://multiple-sclerosis-research.b...emtuzumab.html

Best wishes.
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  #3  
Old 06-30-2017, 04:53 PM
SAW SAW is offline
Optimistic Misfit
 
Join Date: Jun 2015
Posts: 11
Default Lemtrada Treatment Experience - Asking for Feedback

Thanks, Suebee, for the link. Sounds like it will be a very useful resource for us.
SAW
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  #4  
Old 07-01-2017, 03:56 PM
SAW SAW is offline
Optimistic Misfit
 
Join Date: Jun 2015
Posts: 11
Default Alemtuzumab (Lemtrada) Treatment Experience - Asking for Feedback

Your post was very encouraging, [post removed]. It is wonderful that Lemtrada worked for you.

What life style change did you make in conjunction with the Lemtrada treatment?
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  #5  
Old 07-02-2017, 01:06 AM
SAW SAW is offline
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Join Date: Jun 2015
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Our son started a gluten-free diet a few months ago. He wasn't sure it would help, but it was one way to take control of something in his life, and his doctor said it wouldn't hurt. He also misses beer.

Thanks for your offer to speak with our son. We'll follow-up with you after he has had time to get his head around his new situation.
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  #6  
Old 07-12-2017, 01:52 PM
SAW SAW is offline
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Join Date: Jun 2015
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Suebee, Our son spoke with his Houston neurologist last week and had all his questions answered. Your feedback was helpful to prepare him for this conversation.

Our son has two neurologists due to a move from VA to TX. Both of them recommended Lemtrada, and our son will start the infusions after the insurance company approves it. At this point he will have the 5 infusions this year and 3 next year. Apparently the insurance companies are fighting payment if further Lemtrada treatment is needed in the third year.

You'll be interested to know that our son’s two neurologists had different requirements for ongoing testing for side effects. The Johns Hopkins one told our son that he would need to have monthly blood tests for the rest of his life, and the Houston one requires it for 4 years.

Thanks again!
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