catastrophic APS

[stevenr]

history.... numerous TIA'S followed by stroke then diagnosed with pulmonary fibrosis due to APS. got good treatment, sometimes. got better after getting care in boston BWH, around this time i was given CAPS designation. now i have developed multiple longitudinal myelitis. last week went for spinal tap. the lesions are from c3-c5 and t3-t8, ms vs aps on spinal tap not easy to differentiate. anyone else going through spinal lesions?

[stevenr]

2 rhuem that specialize in aps as well. they are thinking about certain steroids again, i am a very difficult case boston puts 2-4 drs plus pa and residents when i go (they can learn) i will more than likely be donating my corpse for aps research when i pass. but im yet to turn 50 so hopefully, got some time yet

i expect that next week ill be heading back for a new plan on how to work this out.

[KellyInTexas Administrator in reply to stevenr]

I’m in San Antonio.

I have a multidisciplinary team here and a multidisciplinary Consultant team in London, including Professor Hughes.

I am unusual in that I also clot at a very high INR. ( I clot at 4.5 so we are now running me 5.0. If I get to 5.5 we are not worrying too much.) I now bridge if I’m symptomatic at 4.0. Even 4.2 . I have not had a bleed yet , but I know that this plan is not fool proof. Nothing is.

My body wants to clot and clot despite a high INR and it’s ramping up, so my Rheumatoligist and Hematologist together diagnosed me as meeting the criteria for early CAPS.

I begin Rituximab on Monday.

I do not have spinal lesions, but I do have other neurological manifestation of APS. ( seizures, optic nerve small strokes...)

[stevenr in reply to KellyInTexas]

rituxin has helped me, well once i got in on a correct schedule. i was taking mycophenolic acid for a while but that was more for my lungs. its now the standard of care for pulmo fibrosis w aps. im glad to have been one of the guinea pigs for that as this may have bogged me down but i feel my part in it is to help others with it. this is my inspiration for cadaver donation. good luck with it all im here for you.

[KellyInTexas Administrator in reply to stevenr]

Thank you! I’ll be asking you questions I’m sure. Thank you very much.

I’m in San Antonio right now for my pre infusion appointment.

I appreciate your , “ pay it forward “ spirit. It’s why we do what we do also.

[jetjetjet in reply to stevenr]

have you found a place to take a donation of body for APS research ?? If so could you let me know . Thank You i have been looking but no success . Lets hope we don't need it any time soon but i would like to get something in place. I have rare blood that i was told by Duke Unn. I did that 8 years ago - but i would like to do more if it would help APS people down the road - Thanks Again C & J

[stevenr in reply to jetjetjet]

no as ive just gotten to the point that im ready to do such a thing need to discuss more w family drs priest and others. i expect ill get some answers though it may take time. ill let you know how it goes

[sconaway160]

I survived catastrophic APS back in 2005! Praying for you.

[stevenr in reply to sconaway160]

thanks as i pray for you also

[stevenr]

so abnormal spinal tap, no surprises there. more mri's needed same ol well everything takes time

[Thick_Blood]

I am also a CAPS survivor since 2005 and the first person to receive Rituximab in 2005. I know the creator of Rituximab personally and thanked him for saving my life. I have taken a shot of LW Heparin ever day for 14 years.

[HollyHeski Administrator]

Hi, thats good news for you - would love to hear more of your experiences?

[Thick_Blood in reply to HollyHeski]

New to forum. Lots of issues over the years, Dave Maloney. Researcher who invented Rituximab, works at Fred Hutch Cancer Research Center close to our home. Blessed that he’s close by. Currently dealing with a fractured hip from a fall but glad to be alive