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Lemtrada, Tysabri, Or Tecfidera, I Can't Decide! What Do You Guys Take And What Is Your Experience Please!

A MyMSTeam Member asked a question 💭
Hull, UK

Finally got a new neuro after 5 and a half years, one visit and been offered treatment. But which one, are the risks associated with Tysabri worth it? it does look most promising?

I don't really have anyone at home to discuss it with, and most of everyone else doesn't see MS as anything more than a phantom thing I 'complain about. So any expoeriece would be appreciated, I haven't had test results back regarding JC virus yet.

I'm tempted to have the Tysabri for 2 years and then re-evaluate, but… read more

May 17, 2017
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A MyMSTeam Member

My partner was in similar position. What helped us to go with Tysabri was putting the risk in perspective to the risks you run everyday in your current life e.g crossing the road. She is JCV negative so we thought the PML risk ( which we felt was the most concerning) was something like 1 chance in 10,000 or so over 2 yrs ( but go with what you've been told the statistics are now). we felt there are many things we do each day that have similar chances of happening that we quite happily ignore but could still be severe - being hit by car when you cross the street?

But it was not an easy decision and a personal choice. Making a decision was very stressful as you don't know what will happen, and in any event Tysabri or other treatments are not cures- so you are swapping one set of risks (possible but uncertain MS relapses etc) with another ( possible uncertain medical side effects).

We went with Tysabri in the end. Other factors in our decision included that treatment was only every 4 weeks ( daily stuff felt like a hassle to us) , the treatments included regular follow ups with MS nurse/ Nuro, and the effectiveness of treatment. It was also clear our Nuro preferred this course - but the decision was ours to take.

Anyway she is nearly 2 yrs in, no new lesions and no relapses , so, so far so good.

Good luck with whatever way you choose to go.

May 22, 2017
A MyMSTeam Member

Tecfidera, it's a pill, some flushing of the face, take a baby aspirin, maybe some loss bowels, and blood work every three months. I'm doing great for 20yrs with MS. I did shots for fifteen years. Good luck to you

May 17, 2017
A MyMSTeam Member

My partner became JCV positive - which increases the risk profile for Tysabri Now using Tecfidera and MS has remained stable. Occasionally forgets a dose if our daily routine changes but doesn’t seem to be an issue. We were advised to go with the most effective options as early as possible when it came to DMTs.

May 21, 2022
A MyMSTeam Member

I have been on Tysabri for four years and all is going well. I was on avonex for ten years and had all kinds of side effects, none with Tysabri. I will take it tilll I test positive for JCV. 32 years still going strong.

May 22, 2017
A MyMSTeam Member

I feel great, research with your doctor

May 19, 2017

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