Catastrophic APS: Please help!! My APS... - Hughes Syndrome A...

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Catastrophic APS

Lind8 profile image
25 Replies

Please help!! My APS has turned catastrophi catastrophic. It has shut down my adrenal gland & now my kidneys. I started dialysis last week. They have tried plasma exchange, high dose steriods to no avail. Im still on Warfarin. Has anybody found a way to get it back under control?

25 Replies
HollyHeski profile image

Hi, not had personal experience but just wanted to send you a big hug 🤗 and wishing you a speedy recovery.Others on here who have gone through will answer shortly.

Lind8 profile image
Lind8 in reply to HollyHeski

Thank you means a lot. Hospital tryng to get pool funding for eculzumab. Been in hospital nearly 3 months only just escaped but dialysis 3 timesaving week. All started because I went for bowel op & they stopped my warfarin . Hope you are keeping well

HollyHeski profile image
HollyHeskiAdministrator in reply to Lind8

You must be exhausted, glad your spending sometime at home- nothing like your own bed. xx

GinaD profile image

I have no personal experience with CAPS,so I have no medical advice to share. But I will, as my Quaker friend says, "hold you in the light." And know that all of us on this site will do the same.

Yes, I went catastrophic a few years ago. Have you tried chemotherapy? After 20 plasmapheresis weren't working we tried Rituxin infusions and that worked!

Lind8 profile image
Lind8 in reply to grandmagigitovivi

Thank you for your reply. They are planning on starring me on chemotherapy Eculizumab which they said is newer next drug on from Rituximab. So glad to hear they got yours under control. Gives me hope. Did it affect your kidneys ? & did they start to work again if you don't mind me asking. The dialysis is really getting me down . Thanks so much Linda

grandmagigitovivi profile image
grandmagigitovivi in reply to Lind8

No, nothing with my kidneys. Hang in there, this will be a distant memory soon. God bless

nmousdic profile image

you can ask about IVIG and Interleukin 6 antagonists, plasmapheresis, and Rituximab

Lind8 profile image

Thank you Tried the plasma exchange & waiting to start on Eculizumab which they said is the never version on Rituximab. Just waiting on funding. I will go back to me haematologist with all the above suggestions to so thank you so much Linda

Byourownadvocate profile image

May I ask how many plasma treatments did you receive? I know you’re frustrated, but I can tell you, I had received numerous plasma treatments, results did vary after treatments, sometimes immediate improvements, sometimes not. I was then given Rituximab, I continue with that treatment, dips and valleys, coming up with treatments as I go along, have good days and bad days, but I’m functioning. Good luck to you.

Lind8 profile image

I had 6 plasma transfusions but no response at all . Hematology said pointless continuing them . Eculizumab next stage . Renal man wanted to continue with Plasma transfusions. I just want to try & get my kidneys & adrenal gland to work again. Can I please ask how long yours has been catastrophic. All a bit scary so good to hear know people can still function with it . Thanks again Linda

lloydyuk profile image


I experienced/survived CAPS 10 years ago.

Started with a brain haemorrhage (on warfarin) so naturally the emergency department reversed this & it’s thought that triggered CAPS.

I had kidney/adrenal infarcts then haemorrhages. I’m now Addisonian (Addisons disease) which requires daily medication & management. My kidney function went south however it’s recovered to a good extent. I had some previous damage from my initial APS diagnosis in 1995 though.

As far as I can recall I had 20 rounds of plasma exchange however I think the Rituximab was used alongside/straight after (to suppress immune system?)

I had other complications at the time however not directly linked to APS/CAPS.

Hope you’re on the mend quickly.


Lind8 profile image
Lind8 in reply to lloydyuk

Hi Danny, thank you for your reply, similar story, although stopped my warfarin for bowel camcer surgury which caused had 2 heart attacks. Then had complications as post surgery my bowel went to sleep. By the time they got me back on Warfarin it had gone into CAPS. You have given me so much hope for my kidneys & getting on top of caps. None of my consultants have dealt directly with it before, If Eculiizumab doesn't work will push for Rituximab instead. Thank you so much Linda

lloydyuk profile image
lloydyuk in reply to Lind8

I’m in Bristol & my consultant now has experience of CAPS with more patients than me.

I remember too I’m pretty sure I was put on a heparin line, then enoxiparin (low molecular weight heparin) then transitioned to warfarin again.

Dr H Gunawardena. Brilliant doctor & a good human being too!

I found this! the hospital consultant put it together for me to use in a presentation
lloydyuk profile image
lloydyuk in reply to lloydyuk

the image highlighted the must do/check items I think?

Lind8 profile image
Lind8 in reply to lloydyuk

Very useful info thank you. I am allergic to heparin so use fondaparinx as bridging agent in inr below 3. I was on fondaparinx only when had heart attacks. My consultants have began liaising with consultants in a university hospital now so hopefully things will move quickly now. It's just so good to know I'm not the only person that has Caps & that people have found treatments that help. Thank you

KellyInTexas profile image

dr Richard cervera ( Rheumatologist) in Barcelona has the greatest success with caps and your doctor would be able to contact him for the advice you need.

He is considered the CAPS specialist, and also has a living CAPS registry ( ongoing/ updated.)

Lind8 profile image
Lind8 in reply to KellyInTexas

Thank you speaking to hematologist today will pass all this info on. You are all so amazing & kind on this site. I've gone from feeling so hopeless, to knowing so many things left to try now. I honestly can not thank everyone enough.

Wittycjt profile image
Wittycjt in reply to Lind8

I hope the appointment has put you on a path of healing. Please share the information he gave you. May you start to heal and this be a past memory, all the best, Cindy

Lind8 profile image
Lind8 in reply to Wittycjt

Hi haematologist is going to start me on Rituximab now, but my kidney function, but after being home & running my inr high 3s has started to improve. I have gone from 8% to 21% kidney function. So renal Dr said yesterday I can try stopping dialysis!! So so happy. I still have to go for weekly for bloods & to have chest line flushed for next 12 months, but feel like things might finally be heading in the right direction kidney wise.

Wittycjt profile image
Wittycjt in reply to Lind8

yay a turn for the best!

MaryF profile image

Hi not had this, but many have, I hope it calms down, but it may take time, stay strong and positive. MaryF

Lind8 profile image
Lind8 in reply to MaryF

Thank you. Feel so much better now back home & in control of own warfarin so can run it high 3s again. It looks like things are starting to improve already 🤞

Skyllark profile image

my wife has CAPS…she does Plasmapheresis every two week. She has been doing this for 8 years… and has kept her immune system at bay. She has had minimal issues, even taking Covid vaccine 4 times.

Lind8 profile image
Lind8 in reply to Skyllark

Hi thank you for reply. They tried that while in hospital but unfortunately didn't work . I'm now due to start rhutexamab on Thursday & if no success they will try me on eculizumab. Things are more stable at mo, even my kidney function is up to 20%, but they said its because I'm on high dose steriods. Good to hear your wife is managing her CAPS it's a lot to deal with.

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