Hi, I was diagnosed last December and started very quickly on Tysabri infusions every 4 weeks. I had my 12th infusion last month and was informed out of the blue that it was changing to every 6 weeks unless I wanted to continue every 4 weeks and have it subcutaneous. I havent suffered any side effects as yet and I’m wondering really what to do. Has everyone else experienced this change of schedule on Tysabri? And what has been the impact on relapses etc?
This might be of interest to you: Loss of Antibody with anti-CD20 associated with poor COVID response – The MS-Blog
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Hmm. Sue has given you the link to the paper that says a 6-weekly dosing interval is generally OK. My n=1 personal experience says different. I switched to 6-weekly infusion during the early part of the lockdowns, and half way through the second 6-week gap, I started relapsing. This is after 10+ relapse-free years on Tysabri. I swapped back to 4-weekly in a hurry, and will be very hard to persuade to try a longer dosing interval again. But as Sue says, 6-weekly seems to be generally very well tolerated, so I offer my experience only as personal anecdote and in the knowledge that proper studies indicate it’s fine for most people. But not for me, alas.
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Thank you Sue, I will read with interest. My next appointment is 7th December after a 6 week gap and I said I would make a decision having read the little evidence there is.
Sophie x
Thank you Alison, I know your experience is only anedotal but worthy nevertheless. I’m really torn at the minute. My instinct says to stick to the 4 weekly, but I’ve only been on for 12 months. I need to speak with the ms nurse, but imagine they’re ambiguous. Your experience interesting to hear. Did your relapses stop once back on 4 weekly? And do you mind me asking if you had an mri to assess any further lesions?
Its good to hear you’re back in track.
Sophie
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Yes thanks, it petered out and came to nothing and all well since, fingers crossed. But it was an uncomfortable reminder that I daren’t let my MS see a chink of light. There was nothing new to see on my annual Tysabri MRI. But I do feel like a walking cautionary tale!
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Definitely worth hearing peoples actual experience of 6 week spacing as opposed to 4. I remember first hearing of 6 week gaps in relation to the Lockdown. The reports from the neurologists was that the Tysabri worked just as well, but if anyone else has tried - with positive or negative results it would be interesting.
Sue
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