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.
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
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.
I like tecifidera cause its a pill which is VERY convenient and I had little no issues with side effects. I did have to change to tysabri after a year on it because it wasnt working well enough. But as an option to try if you're not yet ready to go back to infusions its a good one to consider. For me I cant do gilenya and i needed a more aggressive approach so tysabri became the best choice. I thinks its a great option also at the right time for the person. Its a little rougher to deal with compared to tec believe it or not but its still manageable so if its whats best for me now im 100% comfortable with it. Good luck!
My MRI looks great since being on Tecfidera. And I feel great.
Hi I was on tysabari for 2 years it was good I had no relapses in that time but then I enveloped the jc virus and I decided to stop myself but I had 2 good years better than nothing its worth a shot a bit tired after infusions just rest up and be kind to yourself good luck xxxx😅
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