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Old 08-20-2007, 03:21 AM   #1
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catherine352 HB User
APS Positive what is the Prognosis? am I a walking time bomb?

I wanted to know because I am quite scared, I have APS, I thought it was just
relevent to pregnancy. I had frequent miscarriages and not one doctor had
mentioned to me that I was at risk for strokes, blood clots, you know stuff that could kill you with out warning. Its scary to me. What is the prognosis? How could all the Drs, I have seen that had this info not say anything about treatment for this?

I have suspected SLE as well but one (DR says yes, others say no) , which most of my other crazy symptoms point towards, is a lupus patient have a shortened life? I mean will I see my children grow up?
I am so scared, I hope I am not sounding stupid or insulting any of you who are
working very hard at maintaining this disease, but I read alot of the posts and some people mentioned that they had relatives die from SLE in their twenties and some in their 40's > I am 39 with 4 kids , should I be preparing to accept the fact this could kill me within 10-20 years from now or sooner ?I was hoping to live a nice long time. I must sound like a real dummy, but I am freaked

 
Old 08-20-2007, 06:34 PM   #2
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Prognosis of APS and LUPUS I take the "0" replies means uh-o

Hey, no one replied to my thread asking about the prognosis of APS making me a walking time bomb isn't such a great topic to bring up or does that mean the prognosis is "bad". I am assuming it is like anything, taking good care of myself
I should do okay, living one day at a time.

I promise not to ask this question again, seems like no one wants to talk about
what may happen as a result of this syndrome.

Last edited by catherine352; 08-20-2007 at 06:38 PM.

 
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Old 08-21-2007, 05:03 AM   #3
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VeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB UserVeeJ HB User
Re: Prognosis of APS and LUPUS I take the "0" replies means uh-o

Hi, Catherine. I don't have APS myself, so I didn't want to be the first to reply... But from what I've read, this condition is NOT a death sentence, by any stretch of the imagination! To read up on it, try the SEARCH BOX in the upper left portion of the screen. Also, Dr. Wallace devotes a few pages to it in his lupus hardcover, which is available in most libraries & bookstores.

Bye, from Vee

 
Old 08-21-2007, 05:52 AM   #4
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Re: Prognosis of APS and LUPUS I take the "0" replies means uh-o

If APS is untreated, then, yes, you would be a walking time bomb, a stroke, dvt, heart attack,pulmonary embolism etc. waiting to happen. With treatment, (coumadin,warfarin,in some cases good old asprin) the prognosis is much, much better, enabling a long and healthy life. If I understand correctly, the key is to have you clotting time tested often and take your meds properly. Also, if you plan to have children,or become pregnant, this is something your obgyn has to know about immediately, as the condition, untreated or not treated properly can predispose you to miscarriage. I do not have tons of experience with the subject and was hoping someone with more knowledge would answer as well take care,and, take your meds

 
Old 08-21-2007, 08:11 PM   #5
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Re: Prognosis of APS and LUPUS I take the "0" replies means uh-o

Thanks you guys, I feel much better. I do take the baby aspirin 81mgs. I am going in for a consultation hopefully with Dr's located at a very reputable hospital in Chicago. I figured its time to go where the top dogs are, I am tired of messing around playing guessing games with my health like everyone else with these sypmtoms. Thank you for your re assureance! (sp)

 
Old 08-22-2007, 02:28 AM   #6
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Re: APS Positive what is the Prognosis? am I a walking time bomb?

Good luck with your appt. You should be able to find any number of excellent drs. in the Chicago area---but I hope you'll get what you need from this appt. Let us know how it goes, when you have the time, OK? Take care, Vee

 
Old 08-22-2007, 02:30 PM   #7
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Smile Re: APS Positive what is the Prognosis? am I a walking time bomb?

Hello catherine,

I have only just seen your post. Normally if a member has gone through things and is able to discuss it, you will get a reply quickly. I personally have lots of other medical problems going that prevent me from coming here as frequently as I would like to. I am sure the other memebrs have difficulties at times too, this is why things are not always answered quickly. I will do my best to help you on this one now though.

It can be difficult to answer questions of a specific nature, as these are normally dealt with by doctors who deal with lupus patients and have expertise in the condition. I have had SLE for well over 30 years and I also have amongst other things APS. I have tried below to do my best to give you some answers as a patient not as a doctor. Any specific questions should really be addressed to a doctor concerning this and anything that proves to be frightening for you. As I said I have had APS for many years and I thought the information I am giving below would be an assurance that the prognosis is not bad. I hope it will put your mind at ease.

Because you have lupus it doesn't mean that also have APS. Nor does it mean that APS will 'turn' into lupus. The chances of having one are probably a bit higher than average if you have the other. They are in themselves distinct conditions and whilst they often many people have one and not the other. The diagnosis for either requires specific clinical evidence, not just antibodies found in laboratory tests.

There are two different forms of APS. There is primary - meaning it is an illness on its own. Also there is secondary - which means there is also another problem going on which for many patients means they have lupus too.

As far as treatment goes, some doctors recommend aspirin therapy, but, generally, no major lifestyle changes are necessary. For patients who have the antiphospholipid syndrome and have had a blood clot, treatment consists of anticoagulant therapy which are known as 'blood thinners'. This is 'normally' Warfarin/Coumadin and specific care has to be taken when having this. This is the most commony used treatment for the prevention of blood clots. Regular checks have to be made to keep a check on levels of clotting of your blood.

If this treatmetn is iven then there are things that you have to be careful about which are important. One thing is to make sure that you don't get too much vitamin K for instance as this will thin the blood. Normal portions of Vit K containing vegetables and so on are ok, but you shouldn't have huge portions. Cranberry juice should also be avoided, I found this out recently. There are do's and dont's with the treatment but regular visits to the blood lab will keep things up to date and on an even keel. There are things that need to be done to keep the risks low of blood clots. These must be discussed with a doctor though.

To summarise - thank goodness for that I hear you say - having APS will not neccessarily shorten your life. There will have to be changes made to your life yes, and it is up to you basically how you keep to these changes and work with the doctors in implementing them. The changes will not be restrictive in any great way, but they are worth it believe me. As I said earlier, these things should be discussed with your doctor.

I have had major heart attacks, open heart surgery and blood clots in both my lungs and a dvt in my leg, all in the last 3 1/2 years, but I am still here. I was advised to make these changes and I am doing ok.

Sorry this was so long, but I wanted to put your mind at rest. Carry on carrying on my friend, you will be ok. Keep on coming back, we will answer your questions as and if we can.

Take care

goldenwings
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I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.

 
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