15 posts Page 2 of 2
Thank you so much Judy for the detailed and thoughtful response. I will be poring over the material you've put us onto; that appears to be a great resource and is one I haven't seen before.

These risk-reward calculations are so personal, even more so for a disease that is incredibly variable.

I haven't found a way to have this forum notify me of replies and I'm not always good about checking. I apologize for not recognizing your thoughtful contribution more quickly.

Good luck and be well!

-Shannon
Oh! That's the Barts and London blog - it's fantastic. Thank you!

I have in fact seen it and we used the PML risk calculator (over and over) as one of our redundant checks on the Biogen-provided info.
Hi Folks,

I recently attended the OMS retreat at The Gawler Foundation in Australia and during one of the sessions we discussed Tysabri and the topic of taking every 8 weeks dosage compared to every 4 weeks. We were informed that this was a topic covered at ECTRIMS 2016 http://www.ectrims-congress.eu/2016.html.

I am currently on Tysabri, which I wish to gradually stop taking within the next 5 years, although I realise there are huge risks of relapses commencing cessation. But I want to weigh up the risks/my options and gather evidence about, at least, transitioning from a 4 to every 8 weeks dosage. I was informed that there is information/papers on the ECTRIMS 2016 website regarding the topic of lengthening the time between infusions, but I can't find anything. Does anyone know where I could find this information as evidence?

I would like to gather up as much info about this in order to discuss my options with my neurologist.

Many thanks,
H
Yikes, I had replies on here I was totally unaware of. I need to revisit my settings.

H, a quick Google showed extended interval dosing has been discussed at least since 2015. Let's hope that it's an over abundance of caution and not pharma sales driving the 28-day standard.

I know my son's neuro publishes in this area and the clinic is involved in trials. They've told us they consider it for patients after 9-12 mos.

We will revisit it with them soon.

Veg, I want to thank you for the MBSR suggestion. It's very much a part of our lives now - a real gift.

Judy, fantastic info.

I really appreciate everyone's insight and input.

Be well.
Shannon
Lovely to hear from you and your energy.
15 posts Page 2 of 2

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