Looking for people with CAPS!

[Skyllark]

who out there has CAPS? looking to connect with this advanced version of APS... what you have been through, what treatments used when you had bouts with CAPS

[KellyO]

What is CAPS?

[Skyllark in reply to KellyO]

Catastrophic Antiphospholipid

jrheum.com/subscribers/07/0...

[lucky1]

My introduction to APS could be considered 'CAPS' with an arterial clot back of head, a large DVT (ankle to knee left leg) and PE in the space of a week

The arterial clot caused a bilateral cerebellar infarcts complicated with an intra cerebal bleed.

I have been on warfarin for 12 and a half years without further complicationss

[MaryF Administrator]

So glad to hear that Lucky1 has some good news in the blog here. and please keep us posted. Mary F x hope things calm down in the right direction soon.

[janjan78]

I'm with Lucky1 on that.....defo think it should be considered catastrophic!!! =O Not entirely sure where mine stands (catastrophic or not) as my diagnosis arrived with a BANG aswell.......pre-eclampsia(placenta was infarciated badly!)....eclamptic fit (8mins!).......DVT.....PE.....all within 10 days.......ob/gyn tested for APS & bingo..........buuuuuuuut zip on several yrs later when I needed sphenoid sinus surgery & another hospital doubted the diagnosis & wouldn't do the surgery until I had another test done (as it meant being on heparin for the op & would bleed badly from an already very bleedy place anyway!) the tests came back as having APS so all this "doubt" was logged in my file and everywhere I go for the slightest thing every doctor/consultant says "oh yes there was doubt over the APS"........I then say in a tired voice "read on"....."ah yes you have APS".........but I get a bit annoyed over the "do i don't I have it" scenario that happens EVERYTIME =( but hey-ho onwards & upwards!!! lol =D also like lucky1 I haven't had anything since (well am under investigation for unexplained migraine which could be APS related but that's a whole other battle!) and that's 14yrs ago and I'm only on aspirin everyday =)

[Mystynzl]

Hello,

I have sero-negative CAPS....I had numerous DVTS, One TIA..multple mini strokes. Most recent is a blood clot compromised the blood supply to my left kidney and I bled internally...then PE about 5 weeks ago and a large DVT in my left leg. I was diagnosed in May 2011 and had been on warfarin for an undiagnosed blood clot disorder since 2007. I have had four miscarriages and two full term pregnancies..(i have two awesome sons). I am now on clexane and warfarin as my inr is very unstable

[k7pbx]

I can be considered CAPS as it was first discovered with a 98% blockage of my left decending artery at age 48, in 2003. Emergency heart bypass surgery caused a stroke, while on the operating table. A total blockage of the radial artery three weeks later in left arm, treated by a drip of TpA. This led to the discovery of APS. After 9 years on Coumadin and a heart attack and 4 more strokes, I am now 58. This is my history.

[Tiggercat]

I have just signed up here as my husband has just had CAPS diagnosed after 3 weeks in hospital with multiple organ failure. In a week he had myocarditis (no known reason), adrenal insufficiency due to bleeding into the gland, acute kidney injury (no clear cause), he also had very fine bleeds in his finger tips (under nails), and indicators of some liver problems. This was all within a week, and nothing was related to anything else. He has be dx with APS for 3 years. And yes, he almost died but for the 2 Dr's who realised what it could be.

[lloydyuk]

Hi all, I'm a newbie here but not to APS. I was first diagnosed 19 years ago at 21 after many months of tests, loss of speech part paralysis later attributed to APS. I subsequently found out I had minor brain injury from a mini stroke. Lucky once medicated all righted itself. I was always with stable INR which I now realise I took for granted.I continued playing sport doing martial arts too and got away with only bruises at times. V lucky. Anyway it seems around Xmas last year my APS became active unbeknownst to me. Later labelled CAPS, it is thought had I been tighter monitored it could have been prevented. I can only remember bits of the Xmas period and collapsing at 5am on New Year day. A ride in an ambulance to hospital and the fun started. Thanks so much to my amazing wife who was so on the ball and fighting my corner despite the worry etc. The rest I've been told as I have very little recollection. I suffered a cerebellar haemorrhage with complications, a week in a coma kidney haemorrhage, adrenal haemorrhage leaving me with Addison disease and 40 per cent kid function, also once I was stable then suffered relapse thanks to a severe brain infection, back to intensive care. I'm very lucky to be alive as most of the above individually has high mortality rates let alone when all combined! I was in hospital from 1st Jan to end Mar then in a brain rehab until end Jun. Up shot is I've been left with severe balance problems and had to learn how to walk again, have coordination problems, speech problems when I'm tired. Fatigue very easy, had it by about 8 every night. I suffer muscle twitching when tired. I still keep as active as I can, attend Headway a few times a week and go to the gym do a bit of tai chi. My life has changed massively however I choose to focus on what I can do rather than what I can't. After all I'm still here for some reason! My wife is amazing and while we are both frustrated at times we muddle on. I owe her so much, my life for starters. I was fortunate to have some amazing care by doctors, nurses and support staff whom I can't thank enough.

[Tiggercat]

HI lloydyuk.

My husband knows what you are going through. After suffering CAPS last year (previously only ever having a DVT which led to a diagnosis of APS) you can see above your post, that he was also mis-managed.

He was in hospital only 3 weeks.

He is now learning to manage his Addison's disease but has been finding it very hard. The main reason being that we have just discovered that not only were his Heart, Lungs, Kidney's, Adrenal Glands, Liver hit in some way, along with splinter heamorraghes, but now they have finally admitted (a year on) that he also suffered a brain injury which is causing problems on a day to day basis as his brain misfires when put in a "fight or flight" situation, or in a stressful meeting (ie, 2 or more others talking).

As the career of someone with these problems I know how hard it can be some times, let you wife know there are people out there that know what she is going through, as well as people out there that know what you are going through.

[lloydyuk in reply to Tiggercat]

Thank you it is very easy for sufferers and carers alike to feel isolated. Having great family and true friends has helped me immensely. I wish you and your husband well. I will of course pass on your comments to my wife. Headway are a superb charity organisation and have been extremely helpful to me. I live in Bristol btw. I am lucky to have several consultants involved coordinated by 1 who is an amazing lady (Rheumatologist) Fyi my endocrinologist suggested I look at addisonsdisease.org.uk if not type into Google. Very useful and a great help.

[Tiggercat in reply to lloydyuk]

We also frequent the Addison's website. Derek lost his adrenals completely 14 months ago due to CAPS. We are still investigating all that went on then.

Take care, it will improve and you will learn what a new "normal" is, which is different for everyone.

[Tiggercat]

APsnotFab, I find your comment about Vitamin D really interesting. Derek was told by Addison's sufferers that he should be taking it, but we have never heard it here. Strangely enough, he feels better when taking it. Our Dr only TX 1 per month, but a month after he stopped it, he started feeling less well. I wonder if it is working on two fronts.

[Lure2]

Hi ,

What an info!! I was operated for Hyperparatyreos in 2006. Too high PTH and Calcium. Took away 1 out of 3.

My Reumatolog found that I had too little of vitamin D this year. Now I take Calcium and D3 since July. On December 10 I will see my Reumatolog again and also take the usual Beta2Glycoprotein 1. They do not take LA because of my warfarin anymore. I will certainly tell her this!

Thank you APsnotFab for sharing your info. Perhaps I can become zeronegative for the first time in 12 years. (Haha)

Kerstin in Stockholm

[lloydyuk]

Hi im back!

With référence thé vit D matter there is à lot or information on Dr Mercola web site. A homéopathic nutritional doctor. A friend of mine practices similarly. Whilst huge numbers may smirk, i stay open minded. After all modern medicine Is relatively new. What did people used to do?

I encourage people to research for themselves and not rely totally on doctors but work with them.

Information on vit D, Krill Oil, alkaline diets and low carb/gluten free diet are all worth study.

If you couldnt eat it 100 years ago and its not growing or animal then avoid it. Think chemical cocktail and food industry/big Pharma profit.

Lloydyuk

[Lure2 in reply to lloydyuk]

I agree with you.

Prof Hughes has said: "Listen to your body" and also of course "Listen to the patient" (That was for the doctors.)

When reading about D-vitamin I have read and heard that you can eat too much of it thus it is not without sideffects. I will discuss this with my Rheumatolog.

It is a jungle we are living in today and an amount of diets of all kind. I wonder how I am affected of all of my medicine that I ev must take. I try to avoid those affecting my brain. I am lucky because I do not have so much pain only a little in my hands then I do not have to take painkillers.

Hope for a good future!

Kerstin in Stockholm

[Lure2]

Hi APsnotFab

I met my Rhematolog today and as I take D-vitamin because I have too little I told her about prof Shoenfield that says "the higher the better as there are no side effects!"

She knows this professor very well and said that too much D-vitamin can be dangerous.

I have also heard that you should not take too much

D-vitamin.

I thought I should inform you. She knows APS.

Kerstin in Stockholm

[Lure2]

As an answer of the D-vitamin discussion;

I talked to my Rheumatologist last week when I saw her. I have APS but I am also operated for too high calcium in 2006 (Hyperparathyreodism) We have noticed I had too little of D-vitamin so she gave me Calcium and D3-vitamin last June .My calcium is now OK..

I told her what prof Shoenfield had said that "the more the better because D-vitamin has no sideeffects"

She is a scientist in APS and Lupus and take a few patients and I am one of them.

She knows prof Shoenfield very well but said that too much D-vitamin can be dangerous.

So even the professors have different opinions. She gave me more D-vitamin though but I have not a big dose anyway.

I thought I should tell you this. Too much and tool little like in warfarin treatment can be dangerous.

Kerstin in Stockholm