What will be a treatment for my primary aps when a combination of aspirin and Plavix is not reducing Cardiolipins from IgG 0.55 and IgM0.068

[luisal]

I was diagnosed with primary aps on 2009. At first I was on aspirin (75mg.) for may years. Last year Cardiolipins went up to levels of 0.70 and 0.08. Plavix (75 mg.) was added to aspirin. Levels went down to 0.55 and 0.068 but still well beyond normal. I haven't had any thrombosis up to now and the doctor (a Rheumatologist) says the treatment has to be changed. What will a suitable treatment for me? I live in Venezuela where, needless to say, there is no aps specialist.

[Salty]

Luisal, neither aspirin nor plavix nor heparin nor warfarin would be expected to have any effect on the antibody levels. The antibody levels will change over time regardless of which of these treatments you are on. Once you have been properly diagnosed, there is no reason to recheck your antibody levels. The only thing that could result from re checking the levels is in the unlikely event your antibody level fell into the normal range, an uninformed physician (of which there are MANY), might think you no longer have APS and tell you that you no longer need treatment, which could be disastrous. The only way to judge whether you are on the proper treatment is if you have any non-thrombotic manifestations, they should improve or even completely resolve.

[luisal in reply to Salty]

Salty, many thanks for your advice. It helped me a lot in the conversation with my doctor two days ago. The treatment changed to Clexane for 15 days based on recurring symptoms which in my case are throbbing eyes and migraines. The doctor explain to me that he preferred Clexane to Warfarin because of less side effects of the former. He did not, for the first time, order new cardiolipins count. I have read at the Hughes Foundation recommendations that Warfarin is better for symptoms such as thrombosis which is not my case. As you say my symptoms have bettered for a year long with a combination of aspirin and Plavix.

[Salty in reply to luisal]

I am very happy to hear that Luisal. You should be able to get your symptoms much better or even gone with the right treatment combination. Good luck!

[Manofmendip]

Luisal

I agree with Salty, medication for APS helps in reducing the symptoms and does not have an effect on antibody levels. You do not need to keep having your antibody levels checked. The medication should be aimed at reducing the risk of thrombotic incidents and to alleviate other symptoms, as far as is possible.

Best wishes.

Dave

[luisal in reply to Manofmendip]

My doctor, and other doctors I have consulted in Venezuela and in the USA, have problems identifying APS symptoms. In the past, my symptom which is throbbing eyes and migraines, were ill judged as Uveitis and treated as such with Immuran and Methotrexate. It was after consulting the number one specialist (in the USA) that I knew I didn't have Uveitis. But at his turn this doctor ignored throbbing eyes could be related to APS.

I finally found our that migraine was connected to APS after reading the postings of this very helpful blog.

[SueLovett]

There is, at present, no cure for APS. The medications are profolactic to hopefully stop further damage from clotting events. Hope you can get the information you need from your doctor.

[luisal in reply to SueLovett]

Thank you Sue. I also hope my communication with my doctor is better informed.

[GinaD]

Ditto previous remarks about antibody levels.

A note: the immune system is very complex and still only partially understood, which is why we can currently manage allergy and autoimmune diseases, but not cure them. But antibody levels go up when the immune system "turns on." It can turn on because you are exposed to the antigen which closely resemble cardiolipins, or to antigens which do not. Again, its confusing. But the result is that if you happen to inhale at the wrong time, say -- when someone on the bus who has a cold sneeezes -- your immune system may turn everything up which would raise all you antibody levels. Or it may not. Again, it is poorly understood.

So, fluctuating cardiolipin antibodies may have nothing, or everything, to do with the level of your disease. Which is why treatment is usually based on symptoms. If a patient has clotting problems while on asperin, then the medications are usually changed to a stronger anticoagulant.

These fluctuations are also why a positive diagnoosis is dependent on positive tests separated by weeks.

[luisal in reply to GinaD]

I am happy to hear your comments on how a correct diagnosis of the syndrome is done. Because one doubt I have after reading the comments was if the diagnosis was the right one.

My doctor actually ordered at the beginning, and after a thorough Anamnesis, tests separated by weeks of cardiolipins and other test related to lupus, just as you mentioned. Many thanks for this.