Current Information on APS

[dboh]

A friend has directed me to this site, and I'm hoping I can get some information -- or at least get pointed in the right direction.

I was diagnosed with anti-cardiolipin syndrome about 10 years ago and was told that it was very similar to APS and that what applied to APS would apply to what I had. I recently went online and researched APS to see if anything's changed since I last looked or if there's new information.

One thing I can not seem to find is information on the longterm prognosis. My doctor tells me nothing more than it's "serious," but that really doesn't tell me anything. My original research seemed to indicate its effects were limited to clots and miscarriages, but more recent information indicates multiple organ involvement. I'm wondering if that has any longterm serious implications or if this is more of a chronic condition.

Also, is there recent, reliable information on the best level of INR to have? I remember when I first researched this, I found a study that suggested a significant lowering of clot recurrence if the INR was between 3 and 4, as opposed to my doctor's looking for a level of between 2 and 3. I showed her the report, but she was very skeptical and felt that that level would be too high. Has any research been done since then that I could show her? Even though it's been 10 years, I'm still nervous about strokes.

Thanks in advance for any help.

[Mountain Man]

You've discovered that there isn't a whole lot of definitive information on APS available. I got a Dx of anti-cardiolipin APS about 10 years ago, and went through the same process you did trying to learn about the disease and its effects.

Essentially, the effects of the disease aren't predictable. In some people, APS can progress and involve almost any organ system; others, once they control the clotting, have no further detectable disease. Just hope you're in that category, and only time will tell.

There's been a lot of controversy regarding the proper target INR levels; about 4 years ago, a study reported in the NEJM apparently demonstrated that an active range of 2-3 was as effective as 3-4, but that wasn't in APS sufferers, it was in people who'd had ischemic strokes. I keep my INR in the 3-4 range (and my doc agrees with my logic), but I've never had a bleed, and my system heals pretty well at an INR of 4 - I've had a horrendous cut that clotted naturally with my INR at 3.5. I've also had all my teeth extracted with my INR at 1.5 - I refused to go off anticoagulants completely, as I had a series of small strokes when my INR was measured at 1.4.

Beyond that, I don't know what general info I can give you - feel free to ask questions, but I'm just an APS patient, not a doc.

Welcome to the APS Board. It's been awfully quiet around here lateley, but maybe people will again discover Braintalk.

MountainMan

[dboh]

Thanks for the response.

I'm a little nervous about my INR numbers. I've been "cheating" by varying the amounts of Vitamin K I take. I up my Vitamin K intake before blood tests so my numbers appear lower, but I may have overdone it last time with an INR of 1.8. This really surprised me, since I'd had a few bruises and thought I'd gone too far the other way.

I probably need to go to the library and slog through all the back isseus of NEJM. Maybe there are references in that article you mentioned. I'd really like to find some reputable information on the benefit of a higher INR rate.

[JoD]

What medication are you on for the APS ( Someone correct me if I'm wrong but I thought APS was simply the newest terminology for anticardiolipin syndrome). I have been pregnant 8 times, had 1 miscarriage, 1 stillbirth( 21 weeks) 2 preemies ( 32 and 26 weeks) and all the pregnancies were complicated by pre-eclampsia. The 26 weeker was taken early( I never went into labor) because I developed HELLP syndrome. I week after the stillbirth I developed several PE ( enough to have a greenfield filter inserted) DVT and passed several large vaginal clots. Once I was well enough that they were looking at sending me home it was discovered I was allergic to coumadin. I was sent home on heparin injections and eventually was able to take plavix.
My hematologist says an INR of 1 on plavix is fine. If I have to go on to lovenox injections for any reason ( surgery etc) then the INR has to be higher. I guess it depends on what meds you are on to determine where your INR should be.
Joanne

[Mountain Man]

Dboh -

You mentioned takinig vitamin K just before getting your INR tested to lower the value. You really shouldn't mix Coumadin and Vitamin K - they are mutual antagonists, and while your INR may go down, your chances of having some kind of "spike" in either direction is raised when you have competing agonists circulating.

People on Coumadin are told to avoid foods with Vitamin K in them (broccoli, gazpacho beans, etc.). This is not only because it will lower your INR, but also because it will raise your variability and increase the risk of both a clot and a bleed.

Be careful, these are potent drugs.

MountainMan

[Eyzrbrn]

1) You can have Vitamin K while taking Coumadin. It is all about CONSISTENCY. I eat mostly a veggie diet...so what does that leave me to eat? You can have your dose adjusted around the coumadin. Simple as that! Yes, it will drop it for a short period of time...adjust the dose based on the INR and go from there but remain consistent with your diet. Just like anything else when dealing with Coumadin. Consistency IS key!

Here are some links to support this:
http://www.drgourmet.com/warfarin/index.shtml
http://www.warfarinfo.com/foods.htm
http://www.nursingcenter.com/prodev/cearticleprint.asp?CE_ID=494272
http://www.warfarinfo.com/outrageous.htm

2) Plavix is an antiplatelet and will not effect your INR. It will do nothing for venous clotting but will help arterial clotting. APS patients have both arterial and venous clotting. The majority of APS patients take both Coumadin and Aspirin.

Here are some links to support this:
http://www.warfarinfo.com/warfarin-platelets.htm
http://www.warfarinfo.com/aspirin&warfarin.htm
http://www.plavix.com/
http://www.fvleiden.org/ask/35.html

3) The standard treatment for APS is Coumadin, aspirin and Plaquenil since APS is an autoimmune clotting disorder.

Here are some links to support this:
http://www.apsfa.org/docs/APSFAVol5Spring2007.pdf
http://www.emedicine.com/ped/topic118.htm
http://hematology.im.wustl.edu/education/hemerefs/NEJM_346_752.pdf

4) Long term prognosis - This can be pretty variable, depending on the clinical manifestations of the individual patient. Some patients do very poorly very rapidly, and others have one event and do fine on anticoagulation. One thing about this syndrome, one size does not fit all. It is just not a pregnant woman's problem....otherwise how would men have it?

Here are some links to support this:
http://www.apsfa.org/faq/faq4.htm#38
http://www.apsfa.org/faq/faq1.htm#8

5) INRs for this disease really should be individualized depending on clotting & bleeding histories. Many do well at 2-3 and there are many current studies that support it. There are older studies that support 3-4. Some, like me are in the 2.5-3.5 range. I was able to lower it once I was placed on the Plaquenil.

Here are a mess of links to support this:
http://www.apsfa.org/links.htm

Hope that helps. :)

[dboh]

Thanks for all those links! They're sure to help me in my discussions with my doctor. I'm on Plaquenil also; I didn't realize that could affect the INR.

The only Vitamin K I take is what I get in foods. I don't take a pill; in fact, I was surprised to find Vitamin K in many multivitamins.

[Eyzrbrn]

Hi...

Plaquenil doesn't effect the INR. It has a mild antiplatelet effect. It should be in that article I gave to you previously. So not only are you getting that benefit, it will help stabilize your INR, lower your antibodies. Very happy to hear you are on it. :) My INR being lowered because the Plaquenil was doing its job....the antibodies that were building up in my brain and microclotting got under control. No need to keep it high to compensate for what wasn't being fixed with the coumadin. The higher the INR the greater chances of bleed and if I can reduce that risk - more power to me! And I have had my share of bleeds. :( Many days in ICU. Not fun.

You can take Vitamins with Vitamin K in it. Once again, it all goes back to consistency. I by the big bottle that will last me the whole year. I know that it is the same lot so the amount should be the same. I take my multivitamin every morning at the same time. Of course if you add it to your regimen, your INR will need to be adjusted for the first week or so but once you are consistent with it - you should be good to go. Glad to hear you are eating vitamin K foods too. We need that to help our bones. :)