Hi. forgive me if my post is a repeated one, for this is my first time writing on this board.

I've known that something was not normal with me for many yrs. because of this "wierd" joint pain that travels around. I spent years in an on an off pain/discomfort that would flare up/go away and make me crazy! I call this the "traveling virus". Maybe around 12 yrs ago my primary doc at the time tested my ANA and it was speckled.. but no followup was done. I just got the results, didn't really know what to do and kinda moved on with my life accepting these wierd symptoms.

Then in 1998, i had a physical exam and casually mentioned to this new Dr. i went to about the joint pains. He ran some bloodwork and called me a few days later to tell me i tested positive for lupus! I was SHOCKED!! So, he told me to go see a rheumatologist, which I did.

Anyhow, as it turned out, i saw this rheumy and she ran every test in the world she could think of, and came up with the Anticardiolipin syndrome. No lupus.. which was a relief since the other guy told me I had it!! (never went to him again)

OK, since 1998 after the diagnosis I have been faithfully taking 81 mg of baby aspirin daily at the Dr.'s recommendation. I have never had a stroke or anything horrible happen to me (yet). I even had a baby in 2001 with careful monitoring, aspirin, and Dr. visits every 2 weeks.

My question is how many of you have just the anticardiolipin like me and have had a perfectly normal life without any strokes, clots, etc.?? This always weighs on my mind and I wonder if I could have a stroke at any time. I am 39, i have 2 kids and a husband that dismisses my ailments ,so it's hard to talk to him. Plus i know NOBODY with this problem.

I'm really only looking for some support. I also have diabetes.. lucky me!!!, so I go on those boards a lot.

Shop,
I have anticardiolipin syndrome. I was diagnosed in 1996...never had a problem...continued with baby aspirin for years. Then 2 years ago, I developed bloodclots in my heart, which required open heart surgery. Some people never develop problems. Yet, some people can go years without a problem like I did and then bam. Most doctors only treat with aspirin until a clotting event occurs. At that point they'd add a blood thinner, such a coumadin. In the meantime, just have your rheumy keep an eye on it. Joint pain is one of the things to look for. Just so you know, your dr. probably gave you the anti-DS-DNA test, which is specific for lupus. Many people with anticardiolipin antibodies do come up positive for this test, so you can see how the rheumy thought you had it. Hope this helps. Feel free to ask any questions about it.

~sam~

sam,

Thanks for your response. how did you know you had bloodclots???
This damn anticardiolipin really scares me!

Shop,
I wouldn't worry too much about bloodclots in the heart, less than 1% of people with this disorder get the kind of clots that I had. Both of my lower legs (calves) were very swollen. However, that being said, bloodclots in other parts of the body are very common from apls - and I can't comment on those as I haven't had them. I also had several miscarriages - another red flag. Hope this helps.

~sam~

Dear Shop, There are a couple of excellent lupus hardcovers in libraries & bookstores, one by Dr. Daniel Wallace & the other by Dr. Robert Lahita, that address APS.

Dr. Wallace provides some key info. This is NOT an area I know much about, though, but I'll try to convey a few of his main points. It appears that he's saying that 1/3 (or so) of LUPUS patients show evidence of antiphospholipid antibodies, BUT only 1/3 of those have complications. Those figures "crunch" to 1 in 9 of all LUPUS patients.

APS antibodies are seen also in diseases other than lupus (e.g., RA, sceroderma, vasculitis). Weirdly, it seems that when occuring in such OTHER diseases, complications are even less likely.

APS does occur rarely "standalone", meaning without other diseases present.

Dr. Wallace also says treatment guidelines are a bit controversial, but he does lay out when/what he personally does. (I'd rather not try to summarize something so complex or important to you...)

I hope this helps some. I think the info by experts could help you gain a clearer perspective. All best wishes, Vee (P.S. Do you take an antimalarial, like Plaquenil? Dr. Wallace mentions a helpful effect from those, as well as from aspirin---which was news to me!)

Thank you all very much. You are all very nice and supportive on this board!!
I really will look into those books. I try to be positive about everything. I sometimes get in these moods that cause me to be bummed out about the diabetes and the anticardiolipin.

I just reserved those 2 books at the library. Thanks!

Hi, I got the 2 books Veej recommended. I read through them.
Basically, I think that I should NOT read!!!! I like to know everything about a particular subject, but when if affects me, it's hard to take in sometimes!!!

Anyhow, not sure if the books eased my mind or got me thinking more.
By the way, I do take a baby aspirin for 7 years so far daily. the only positive thing i read, and like you said, was that only a third of the 30% of lupus pts. get a problem.

Thanks for your help. I will keep reading these boards!

I was diagnosed with it just over a year ago. I supposedly also have lupus, but it isn't confirmed. I started on Plavix, but it caused problems with my bleeding ulcers. I am now on high doses of fish oil and other natural products. I have had 3 healthy pregnancies. One ealry lost pregnancy. No major problems. Hope it stays that way! I do however, have chronic joint pain that won't go away, headaches, and some memory issues....

Maybe I can ease your mind a bit. I test positive for anticardiolipin, had 3 miscarriages and have two grown children. I am 56yrs old soon to be 57. I did not know about the anticardiolipin problem when I was younger and having children and it was not discovered at that time. It was just discovered 2yrs. ago I still don't take any aspirin or medication for it, and I still have not had any blood clots. I'm just trying to say try to relax I think the odds are on your side I have survived this long with no problems.

Glojer, thanks for your post.
By the way, how come your Dr. didn't suggest 81 mg of aspirin for you? That seems to be a preventative measure that could really help you.

Do you have any symptoms?? Also, what made the Dr. test you for anticardiolipin???

I ask my rhuemy about the aspirin and he said he didn't think it was necessary. He said if he thought I had a problem and needed it he would give me blood thinners. He said if I haven't had a clot or any indications of one or other problems yet he thinks I do not need even the aspirin. I take so much other stuff, I didn't argue with him. I will be seeing a new rhuemy in a couple of weeks, let's see what she says.

When I was first sent to him (2yrs ago) with a high ANA count he did further testing and since I had 3 miscarriages I'm sure the antiphospholipid test was one that was indicated. Of course it came back with high results on the anticardiolipin part. He said that was probably why I had the miscarriages to which I replied "OK" cause my children are now 30 and almost 29yrs old it doesn't matter to me now. Anyway I questioned him about it and he told me of my greater risk for stroke and blood clots and I ask about meds for that at that time and he didn't think it was improtant then either and he hasn't changed his mind. I have obviously lived with this most of my life and have not had the slightest indication of a problem so as they say so far so good the odds are with me at my age.

My problems with lupus or whatever is going to be my final diagnosis is mostly joint pain and mouth sores and itching and that kind of thing. It seems so far I don't have any internal organ problems. Again am going to see a new rhuemy, want another opinion and a doc closer to where I live and we will see what she has to say.

Hope you are feeling well.

Glojer

That is very encouraging that you have lived with the anticardiolipin without any thrombosis.

Originally when I was diagnosed in 1998 with anticardiolipin, my rheumy said it wouldn't hurt to take the aspirin, though it was not a requirement unless a clot or stroke had preceeded. But a few years later, she changed her tune and said i need to take it now due to some course or seminar she attended and studies are showing it is better to take it.

Now, also in one of those books i read last week, the author also highly recommended it even if no problems have occured.

So, definitely just ask the new Dr. you see what the consensus is on the subjec :) :) t. Also, i understand not wanting any more meds than you already have to take. I feel the same way!! I just feel nervous with this condition and i mentally feel better on the aspirin. I actually took it my last pregnancy in 2001 and it may have prevented a miscarriage. Who knows!!

Take care!! Feel well.

Shop those are very valid points thanks for the info. Yes I hope to get a lot of info from the new rhuemy, but it may take a couple of visits and I definatly want an opinion on the aspirin therapy question.

Glojer