Who has CAPS (Catastrophic antiphospholipid syndrome )

[Skyllark]

Hi I am wondering who on here has CAPS, and has done Rituximab? Even better if you are from Canada and have got this treatment, and was able to get it covered under insurance, or funded by your provincial health coverage. Also if anyone has supporting documents that would support this as a successful treatment for CAPS. Really need help with this, my wife has CAPS, in her mid 40's. Her specialists have applied (for 7 years) multiple times for her to get this, but get turned down every time. Please help.

[Thick_Blood]

I have CAPS , I’ve had rituximab and cytoxin , and plasma pheresis on multiple occasions.in. In both cases I was at risk of death due to multiple impacted organs. I live in the Pacific Northwest of the US and my insurance covered 100% of it.

[MaryF Administrator]

Hi, Sorry to hear about, it sounds very difficult for you, do you have a designated APS specialist in Canada helping with this? 1. ncbi.nlm.nih.gov/pmc/articl....

2. ncbi.nlm.nih.gov/pmc/articl...

3. journals.sagepub.com/doi/fu...

MaryF

[Skyllark in reply to MaryF]

We do have specialist for APS, but rituxminab is controlled by the cancer association, and the hospital… and has set requirements for it. Because my wife has neither of the requirements for it… her doctors request is turned down every time.

[stevenr]

i have CAPS been treated w rituxin for close on 10 years, but only regularly for 5. i live in states though. good luck

[KellyInTexas Administrator]

Does she currently have CAPS?

[Thick_Blood]

I’m not really sure I understand your post. CAPS incidents have a 50% mortality rate. Are you saying that she’s had MULTPLE CAPS incidents with multiple organs affected(Definition of CAPS, a rare autoimmune disease in which widespread, intravascular clotting causes multi-organ failure.) and they refused to treat her but she is still alive.

[lloydyuk]

Hi, similarly my understanding of CAPS is that it is an event rather than a long term diagnosis?I may well be wrong of course. I survived CAPS in 2013 and spent 6 months in hospital/rehab after experiencing multiple organ failures/treatments.

I’m very fortunate however it did get stabilised/controlled then was back to day to day management of the APS.

I’ve previously read reports/accounts where people have stated they have on going CAPS when I thought as I said above it was a (hopefully never to be experienced again) event?