Blood test results - cardiolipin!

[Tryfan]

Hi, I've just had notification of positive cardiolipin antibodies (IgG of 20, norm <10) and it has made me very very anxious as there was no explanation of what this might mean.  Is this bad news?  Please help, thanks.

[Scottietottie]

Hi Tryfan 

I just googled and there are a few sites. Here's a pretty straightforward link - but do google and more will come up.

http://www.labtestsonline.org/understanding/analytes/cardiolipin/sample.html

I don't retend to understand it all but it does say that it can relate to AI diseases. It mentions lupus and its not at all unusual to have a Sjogren's/lupus overlap. It mentions other possibilities as well.

I think you really need to make an appointment with someone to go over the results with you. Write some questions down before hand and systematically work through them.

Try not to stress because that will bring on a flare. Lups and SjS overlap in a lot of ways and treatment is pretty similar for both too.

Take care - Scottie 

[Tryfan]

Thank you so much, Scottie.  I had thought that my Rheumatologist was a sensitive soul but I think he has underestimated how I would be affected by a copy of a letter sent to my GP.  I keep reasoning that he would not have sent it if it was an urgent matter and I am trying to stay calm.  Thanks for the link...had just found it myself!  I think that SJS/Lupus overlap is the most reasonable explanation although I have had no positive ANA results.  The letter suggests that I do not have Lupus or indeed 'classical Sjogrens' whatever that is but that my results are 'significant'.  He wants me to have the blood tests repeated in August which is fine.  He seems to have forgotten all the clinical history suddenly....mind you, this letter does seem to be written in haste!  Will investigate further. 

[anita]

Hi,   I'm not sure if I'm qualified to be speaking on this, but I also have antiphospholipid syndrome...which includes the presence of positive cardiolipins.  It can be related to blood clotting disorders (as in my case), but not always.  My doctor says many people have positive cardiolipins without any clinical symptoms at all.  I wouldn't worry until more follow-up is completed or if you have had any type of clotting or stroke signs.  Also, as in many blood tests related to autoimmune disease, results can be positive, then negative, for no apparent reason.    I do know that APS (anti-phospholipid syndrome) can be related directly to sjs or lupus...as many autoimmune diseases can overlap.  If your doctor thinks there is concern with this test result, then maybe you should follow-up with a hematologist as well.

Best,
Anita

[Tryfan]

Thank you so much, Anita.  The idea of Antiphospholipid syndrome came out of the blue and I had no idea what it was.  Did you have a SJS diagnosis first and then APS, I wonder?  Is your SJS officially considered as secondary?  Lots of questions but it is comforting to know that there is someone out there who knows about it. Thank you for the post... all the best, Tryfan (Mary).

[anita]

Mary,

I actually had the SJS for many years (almost 15) before being properly diagnosed at Johns Hopkins in early '08.  I had two strokes in '02 and found out then about the anti-phospholipid syndrome.  They all go together and my doctor at Hopkins (who posts on this site also) still considers the sjs to be primary and that I just have the APS as part of a wide range of neurological manifestations of sjs in my case. 

Please don't automatically think that cardiolipins mean stroke...they don't.  Many people have them present in their blood without incident.  However, if you have sjs, I would think they would be more cautious about clotting issues since the two conditions overlap in many cases.

In most reading I've done (and what my doctor told me), APS is usually not diagnosed unless two blood tests are positive (with a minimum of 6-12 months in between tests) and at least one clinical event (stroke, ameurosis fugax, etc).  Hope this is helpful.   

Good that you'll be following up with another test...until then, try to relax.

Best,
Anita

[Tryfan]

Thanks Anita...will let you know.  I am to have another blood test in August but I do have lots of symptoms which indicate APS (livedo reticularis and blood vessels bursting in my fingers etc..).  I am finding it very difficult to relax...was just getting my head around Sjogrens... still I am beginning to feel rather enlightened about the world around me.  Thanks for the support...as I said, I'll let you know here.  Hope you are okay at present, best wishes, Mary

[anita]

Mary,

Thanks for the reply.  I was curious:  How long have you had the Livedo?  Is it just the legs, or elsewhere?  I have had livedo for 15 years now.  Started on the legs only, but is now everywhere (arms, back, trunk, etc).  Also wanted to ask you about your sjs symptoms (eyes, mouth, GI)... or any problems with BP, heart rate, having to push to urinate, balance, muscle fatigue, etc?

Relaxing is difficult when you're looking at these types of problems...and don't have answers yet.  Been there, done that.  Take a deep breath and put aside what you can until more tests/answers present themselves.  August will be here before you know it.

Be cautious with other symptoms of APS and don't wait if you should have any clotting signs...including temporary or sudden weakness/numbness or temporary loss of vision (even for less then a minute).

Don't hesitate to holler at me should you need to bounce ideas around or just unload how you're feeling.  Take care and hope this finds you doing well today.

Best,
Anita

[Sophiamama]

I tested positive for that too (before I started taking Planquenil).  However, when I was retested about 4 months later it was negative.  The doctor thinks the DMARDs that I started taking might have started to calm my immune system down and that I am hopefully making fewer antibodies.  I don't know that much about it but I understand that this is a concern if you (I don't know if you are female) are trying to get and stay pregnant as it is associated with chronic miscarriages.  I also think that it can lead to clotting problems and increase the chance of stroke.  Hopefully the same thing will happen with you and your subsequent lab work will reveal better results.  Good luck!

[lesleyjoy]

This was the only result that was mildly positive when the rhumy ordered the comprehensive blood tests in Dec 2006. It disappeared soon thereafter. Since then everything back to negative (the usual state of affairs)

Cheers,
Lesley (New Zealand)

[Tryfan]

Big thank you to all!  I feel much better about the whole thing....bit of shock when something new comes up, isn't it!?

Anita - The livedo has been in my forearms only so far and confined to extreme changes in temperature I think.  It has gone very lacey at times but often is barely detectable.  I did have something going on in my leg yesterday (left side of right calf) and it was painful to walk on it for about two hours then it suddenly got better but a small faint bruise appeared on the site. Also, the malar rash was very lumpy yesterday.  What with this and the heart pains and sternum soreness, you can see why I got a bit agitated..

Having got myself in a bit of state (being the sensitive soul I am), I'm not sure whether my symptoms are nervous tension or something else!  I've been to see the GP today (for my own sanity) who told me to email the Rheumatologist with my concerns (which I have done).  My greatest concern is a few stabbing pains to the heart and a general tightness and heaviness on my left upper body including arm (not there all the time).  I do have a diagnosis of Thoracic Outlet syndrome which I think could be of a vascular nature.  Anyway, the GP took my blood pressure and said it was perfectly normal.  I am waiting to hear from the Rheumatologist.  Oh yes, the GP said it was okay for me to take 75mg Aspirin as long as the stomach was okay.  My stomach has been a bit upset these past few days but again it could be nervous tension.  Maybe I had better stop the Aspirin until I speak to the Rheumatologist.

I've got to say that I do feel much better today though and think that all this stress has brought on a sort of flare (as Scottie predicted I think) so my plan is to rest as much as possible (children allowing!) and as you advised, 'try to relax'.  I know this site is about supporting each other but I feel like I'm thinking all about me when others are suffering so much.  I hope I can be some sort of support to you whenever you need it.

Mary