Last reply 2 months ago
Tysabri infusion

Hi , I had my first Tysabri infusion on Wednesday . I felt fine after it & just felt a bit tired. I’m feeling a little off balance when I’m walking since yesterday. Just wondering if anyone experienced anything similar after infusion . Thanks

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amysimpson
2 months ago

Hello Lisa, nice to meet you – I’m Amy. I was diagnosed R&R MS in June 2019 – I was 32, now 33, i’ve been taking Tysabri for over a year now, taking it every 4 weeks – the first 3-4 were exhausting but my body seemed to adapt each time I had the infusion it was less tiring, to the point on my 5th I was able to independently get to and from my infusion alone and I was barely tired. I have never experienced feeling off balance. On my 13th infusion in June 2020 I was told I would be moved to Tysabri every 6 weeks – great – less chance of PML risk, less trips per year, my first infusion at 6 weeks tired me a lot but still no where near to what it did back in June 2019, I think my body just needs to adjust again to it’s new schedule. I started weight lifting in summer 2019 and consciously eat healthy, daily yoga and hourly walk. I can honestly say I have not experienced any MS issues on Tysabri. I wonder if environmental issues are playing a part causing your off balance- heat/anxiety (CV19)/stress/fatigue/sugar – in any event (as I’m sure you will anyway) I’d recommend sharing the change you noticed with nurse at your next infusion if you have this off balance for more than 48 hours call the MS helpline to seek guidance. Really hope this helps somehow xo


lisamarie6
2 months ago

@amysimpson thanks Amy for information. I’ll definitely call nurse if it doesn’t ease . I thought maybe it was just my system adjusting to infusion. I’m really hoping it passes . I was diagnosed with MS in Nov 2019 , I was on copaxzone for a few months. I relapsed in April & MRI showed 2 new lesions on spine . I’m hoping Tysabri will agree with me . Thank you for information , it’s really helpful 😉


amysimpson
2 months ago

Aw no, I’m sorry to hear about your challenges Lisa. It may be an adjustment phase as its fairly new and you have obv been through some difficulty prior :-(. Tysabri is intense DMT and I luckily have had no issues at all other than the tiredness at the start so hoping it suits you too and this passes, always best to kept engaged with the professionals so great that you do. I meet people at infusions who have been on Tysabri from a few months to over 10 years who all share they have had zero relapses. Everyone is different obv with their MS and their DMT experience but fingers crossed this has a more effective result of zero relapse for you too lovely. Wish you the best xo


lisamarie6
2 months ago

@amysimpson Thanks Amy, I’m delighted Tysabri is working so well for u . It’s great to hear others stories of how well Tysabri works for them also . I’m really praying it will agree with me . Take care & tks again x

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