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Tysabri and its associated risks?

Hey!

Sorry if somebody has already posted about this DMT but my neurologist has scheduled for me to start Tysabri next week just until I’ve had my covid jab and then on to Rituximab. Having read about PML and its associated side effects (which seem MUCH worse than MS itself!) I am reluctant to take this DMT…even if the risk is low. Anyone have any experience with Tysabri or and light to shed on this?

Any advice is always much appreciated :slight_smile:

I have been on Tysabri for 10 years and it has been a miracle drug for me.

Look, here’s the thing: you have 100% chance of getting MS (you’ve got it already) and a tiny chance of getting PML on Tysabri. You’re stuck with the MS risk - you can’t get rid of it by declining Tysabri.

In other words, on the list of tings that threaten to drop a bomb into your life, MS is the big risk and PML caused by Tysabri is the tiny risk.

Tysabri is your friend here. It is the thing that can stop your MS from wrecking your life, and there aren’t many things that will do that.

I’m glad that you have a neurologist who is on the ball and wants to move fast to keep you as well as you can be for as long as you can be. Good luck.
Alison

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Wow, I’m really happy its been a life saver for you! I’ve definitely heard more good things about it but I guess these risks are always scary. Thank you for sharing your experience.

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I was part of a Tysabri trial for 15 months and had no significant effects either way. The PML risks are very scary so you need to have full discussions with your neuro team and try to weigh up the potential benefit against the potential risk. Without 20/20 hindsight it will be a difficult shout but once you commit either way stick with it and try to drop any “if only” thoughts. As an ex techie boy I tried to use the published numbers and my own personal thresholds to make the choice. Which ever way you go good luck.