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@roodruss 

Last reply

roodruss

tysabri vs. lemtrada

My family member is in her early 20's and just diagnosed last year. Besides a case of bell's palsy she had only one other relapse that effected her walking and writing and also extreme tiredness. This episode resolved fairly quickly but MRI showed 12 lesions. Within 3 months of MRI she started gilenya. She has been on this med for 5 months with no problems but MRI showed 7 more lesions. Dr. wants to aggressively treat d/t lesion load. She is currently JC neg and just started new job. Tysabri and pml are very worrisome but so is lemtrada. Any insights would be appreciated.
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@Stumbler
@Stumbler
 

@roodruss , thank you for joining us on behalf of your family member. Yes, Disease Modifying Treatments (DMTs) do come with scary side-effects. But, these side-effects are known and can be managed, with monitoring. The PML risk with Tysabri is only a risk if you become JCV positive. And then these levels are constantly checked, so the Tysabri can be withdrawn if the risk threshold become too great. Lemtrada can cause Thyroid issues, but this can be managed with a daily medication. On the other hand, MS also comes with risks. It's unpredictable and the damage it can cause can be disabling and irreversible. We'd prefer not to have to make these decisions, but life's unfortunately not like that. Let us know if you have further questions.

@TracyD
@TracyD
 

@roodrusswith the aggression of the lesion increase which mirrors my own start with MS I had this choice, both are effective, however Lemtrada is the one that offered hope of not just stopping the MS in its tracks but also hope the things could improve. I'm now a year and 10 weeks post round 2, my current clinical status is NEDA - No Evidence Disease Activity. This is confirmed annually by MRI, my old lesions have done what lesions do - broken down and dissapeared. My story is one that has been played out in the public arena for the last year and a half in real time. My blog details from 33 days before my Lemtrada start date and through the whole journey so far. Please take a read at: http://www.tracyslemtradajourney.co.uk Year 1 of the blog is also available on Amazon as an easy to read eBook for £1.99 with all proceeds coming directly here to the nice people at SHIFTMS as it’s a registered charity. https://www.amazon.co.uk/dp/B01GE1V00M\\ You have a friend request, if you or your family member need someone to talk to, I'm happy to share contact details by PM xxx