CAPS?!?!?

[Chef_Spartacus]

My question is, has anyone got any first hand experience or information on CAPS (Chronic Anti phospholipid Syndrome)???

I have experienced some of the symptoms relating to this more serious side of APS!

Thank you

Best wishes

Paul

[MaryF Administrator]

Hi this is from our charity website: hughes-syndrome.org/about-h...

MaryF

[Chef_Spartacus in reply to MaryF]

Thank you Mary

[Ozchick]

I think all APS is a chronic condition and just wondering if you are confusing it with "Catastrophic APS" which is indeed more serious.

[Chef_Spartacus in reply to Ozchick]

Hello Ozchick,

Thank you I stand corrected!

I'm sure Mary pointed that out as well but your dead right, what's the better of two evils? :/

Where in Oz are you at, Ozchick?

Take care

Best wishes

Paul

[Ozchick in reply to Chef_Spartacus]

Foot of the Blue Mountains-west of Sydney ;0

[Chef_Spartacus in reply to Ozchick]

Ah, I know of it but didn't go that far west from Sidney I went up the west coast stopping at Cape Tribulation, then back down again then stayed in Cairns for several weeks :))

Loved it, my sister now lives in Melbourne so I'm due another visit, can't wait :)))

[Ozchick in reply to Chef_Spartacus]

Errrm… maybe the the East coast I'm almost dead centre between Sydney and Katoomba. Cairns is too hot and humid for me!

[lloydyuk]

Hello Paul,

If you can clarify what you mean I may be of use. As Mary said the Hughes website info explains the basis.

Best wishes I hope you don't have it.

[Chef_Spartacus in reply to lloydyuk]

Hello Lloyd,

I'm not sure I can better my clarification! I checked online and this confirmed at lot if not all of my symptoms but it seems to me doctors and specialists have now come to terms with the fact I have APS, they have not done clear tests that I can remember! This is a guess!!!

Thank you

Best wishes

Paul

[GinaD]

APS, is, since it is an autoimmune disease, by definition, a chronic condition. CAPs, or Catastrophic Antiphospholipid Syndrome is an acute APS attack when clots (often in vital organs such as the liver) occur within the span of a few hours. CAPS first reared its ugly head when APS patients whose blood work had returned to normal were taken off their anticoagulants on a trial basis. The literature on these cases is rather scary. I am certainly no expert, but I have not heard of anyone being diagnosed with APS directly from a CAPS episode. -- not that our initial symptoms of TIA, heart attacks and miscarriage can't be scary enough!

Administrators -- take this post down if I am in error!

[Lure2 in reply to GinaD]

Well said Gina - no error!

Kerstin

[darc333]

My son was diagnosed with CAPS in 2009 at the age of 17. This came on very fast...he woke up in the middle of the night complaining of stomach pain. 24 hours later he was life flighted to Seattle Wa. due to his kidneys failing. It took a few day to figure out what was happening to cause this. He was diagnosed with CAPS. He was put on Lovenox & took that for a year then went to Warfarin where he is to remain for life. As for the damage it caused his kidneys, he was on dialysis for 9 months, waiting a transplant. We live in a rural area in Montana & he was doing dialysis at home. He asked his Dr.'s to let him try an experiment. He wanted to see how long he could go without dialysis in case of an emergency (we get snowed in the winter) they were totally against this...but he finally convinced them. Well during his Christmas break from school he tried this...I'm so happy to say...he never went back on!!! His kidneys are now functioning at 54%. The only prescriptions he is on is Warfarin & a blood pressure pill. He is doing well...although we will never know what triggered his body to react the way it did. SCARY

[Chef_Spartacus in reply to darc333]

I'm glad your son is better and managing his illness and he is only in two meds is also good news, I hope all goes well for you both in the future.

Take care

Best wishes

Paul

[lloydyuk]

Hello again Paul,

Like the above I suffered a CAPS episode 2 years ago. I was diagnosed with APS age 22 now 41!

As mentioned above I believe this was triggered in hindsight by poor APS management as I moved home and thus Doctor twice in about 3 years and fell out of the hospitals control despite my protests to the local doctors practice. Anyway first I knew of CAPS was when I suffered a cerebellar haemorrage on New Years day. I was taken to the local hospital where my body began shutting down. I had/have a fantastic team looking after me I must say. I later suffered, ventricular extension, kidney infarcts, adrenal haemorrage (now addisonian) then contracted hydrocephalus, thrombocytopenia most of which I was unaware of at the time luckily. I was in hospital for 3 months bouncing between the ICU neurology ward and high dependency wards I was later fortunate to be transferred to a brain injury rehab centre on site for roughy 10 weeks. Needless to say my sporting days are not as competitive and whilst my cognitive skills are fine (as far as I know) my physicality remains challenging and I'll be honest frustrating.

I truly hope you and others do not get this rare but intense addition.

Its left me with Ataxia, slurred speech when tired/cold weirdly, fatigue (as have many others), non functioning adrenals and an ommya reservoir as I'm told the 3 shunts I had became infected adding to my issues at the time so all had to be removed.

I've met some amazing people on the way both staff and fellow patients and truly realised the value of life.

Best wishes

[Chef_Spartacus in reply to lloydyuk]

Thank you for your kind thoughts Lloyd I hope life is kind to you over the coming years, sounds like you've been through enough

Take care Lloyd and keep smiling it gives people like me courage and I hope you too!

Best wishes

Paul

[lloydyuk in reply to Chef_Spartacus]

Thanks Paul I appreciate that.

If I can help with anything please don't hesitate to message me here or privately.