Can APS turn into CAPS?

[Ronda]

Hello my name is Rhonda. I don't have APS but my son does. He is 22 and has had it since he was 12. I was wondering if APS can turn into CAPS?

[jessielou]

Hi Ronda,

From what I understand it's a very rare complication of Aps, I will check into this further and get back to you. I hope your son is feeling ok today.

Take care gentle hugs love Sheena xxxx

[Ronda in reply to jessielou]

Hi Jessielou. my son Anthony has learned to deal with his disease but it's hard for him and me and the extended family. He has aches and pains on an every day basis. He has had a really bad past year. More blood clots were found in his right leg in June 2011 and of course he got put in the hospital. ( He was a patient of St Judes up till this past January. He had to find another dr because he had more issues coming up that St Judes didnt deal with.) while he was in the hospital his heart rate was down to 35 and 39...but it was assumed that it was because he was on pain medecine for his leg. We went back the following week for a follow up appointment and his heart rate was still in the 30's so they sent him to a heart dr that same day. They found he has a murmur and had a 2 holes in his heart. August of last year we made the trip to Vanderbilt and had those holes closed. His heart rate is still low it ranges any where from 30's to 50-ish. He looses partial eyesight in his left eye. That has been happening for years and he is starting to see floaters now. He has 20/20 vision. The dr's still can't figure that one out. He doesn't have migraines just bad sinuses. He has suffered from vertigo. He can't sit for too long because of his legs. He has had clots in both legs. The first ones when he was 12. They were in his left thigh. He can't walk for to long he doesnt sleep for too long because he just has aches and pains all the time. The dr's no longer do an I.N.R. on him any more because his body doesn't absorb warfrin they do a FACTOR 10 RATIO on him that test takes about 3 to 5 days to come back. he is on 13 verses 14 mg coumadin they want his blood to stay around the 30%. The dr's don't take his pain seriously He can't hold a job and has been denied on disability because of his age (he's 22) He's a wonderful young man and just by looking at him a person would never guess he has health issues. It stresses the both of us out...gentle hugs to you too!

[lucky1]

anything is possible but if he is already diagnosed and on treatment it would be unlikely. My understanding of CAPS is that multiple organs in the body are affected at the same time.

Individually the common ones we know are stroke, heart attack, DVT's, PE. Less known could be kidney, liver, pancreas, eye sight, as any organ in the body that needs a supply of blood could be affected.

[Ronda in reply to lucky1]

He has eye trouble. on a daily basis. The dr's can't figure that one out. Have been to two eye specialists. and lung dr (they believe he has asthma) and a neurologist and a heart dr...but thanks for the feedback!

[MaryF Administrator]

Hello, I believe it is possible in rare cases, but more likely with no initial treatment of APS. Please let us know if you have any further questions. Hoping that your soon has a good team with understanding of his APS. MaryF x

[Ronda]

Hello Mary, the doctors are still studying him he is the first patient that has been there that has A.P.S.. St Judes took care of him for 10 years but no longer because he has more issues that St Judes doesn't deal with. His dr doesn't know that much about the disease so when my son mentions any thing about his pain the dr's like to give their theory as to why he is in pain...they assume and have an answer for every pain he has. But I'm his mom and I'm the one who lives with him and see's his pain. Thank you Mary for the concern and feedback!

[MaryF Administrator]

Is it possible that the physicians involved in your son's care would consider contacting Professor Hughes by telephone to have some guided advice? This might be a consideration, certainly one I would do. My daughter has a diagnosis of SLE Lupus and also probably Hughes.. she has been very ill, She is under St Thomas' which I had to fight to get here, and I am under them, plus my local hospital, and also London Bridge, with Professor Hughes. I keep him totally in the loop about my family. I think if I did not have access to these hospitals, and perhaps lived miles away or even abroad, I would be loading my doctors and consultants up with the contacts at St Thomas and London Bridge and getting them to phone up for world class advise. I really feel for you, and hope things improve Mary F x

[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 is on warfarin. And yes, he almost died but for the 2 Dr's who realised what it could be.

There is normally a trigger for CAPS such as withholding warfarin, surgery (especially abdominal, which is what my husband had), or an infection of some type.

My understanding is also that it is not where one organ caused failure in others, but where organs fail individually. My husband also had lung issues, but they believe that was bought on by the heart issues, therefore was not included in the CAPS diagnosis. The only way to be absolute that it is CAPS is by biopsy or autopsy (neither of which is a good option as one could cause another event, and the other means you didn't survive the first event.