Tests show that my son is now negative for the antiphospholipid antibody & his Dr. thinks he could stop taking Warfarin. Is this safe?

My son was diagnosed with CAPS resulting in kidney failure in 2009 at age 17. He was on Lovanox for 2 years/now Warfarin. He was on dialysis for 10 months waiting a kidney transplant. Beings we live in a rural area, & sometimes get snowed in, my son asked his doctors if he could do a test to see how long he could go without dialysis. Christmas Eve 2009 he stopped dialysis, never to return to it. His kidneys are functioning at 51%. The only meds he takes are a low dose of blood pressure medicine and Warfarin. Along with some Vitamins he has chosen. He now has a new hemotologist who says that his tests show he is now negative for the antiphospholipid antibody & thinks he could stop taking Warfarin...I'm very uncomfortable with this...what do you think?

24 Replies

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  • I'm not a medical professional but I have heard that people can test negative for the APS antibodies and still have the disease. I don't think it simply goes away. I think I've read that there are many people with symptoms of APS whose blood tests don't show high levels of the antibodies. You might want to get a second opinion and/or do some research on the APS websites before taking the blood thinning away from him. Otherwise, you may be unpleasantly surprised by clotting issues.

  • Thank you, those have been my thoughts as well. All the research I've done so far, shows that patients stay on blood thinners long term.

  • Hi, With blood work you can always get a false negative or false positive. It might be worth while having the test ran again. Best of luck!

  • Stick with olleberj's advice. And be sure the second opinion is from someone very reputable! Seems like a very bad idea to go off the warfarin.

  • Hello there, the condition does not go away, and these negative tests results can be quite common. I have APS, and have yet to pass a test, although my daughter only 15, has, I am classed as seronegative APS, however some take years and eventually they pass, having correctly been diagnosed as having the disease despite the tests showing otherwise for years. Some people also have postive ones for ages then go on to have a negative one. There are plenty of papers available on seronegative hughes syndrome on the HSF website. Best wishes. Mary F x

    Also your hematologist could perhaps ring for advice:

    guysandstthomas.nhs.uk/our-...

  • Thank you guys so much...I am very against this myself, just don't feel right. I was quite shocked when the Dr. mentioned this.

  • Hi. I just wanted to add my story. I was put on Warfarin for 8 months after a DVT and my research told me that, because of all my other symptoms that had also flared up, I must surely have APS. But I tested negative and the Haemo took me off Warfarin. Four months later, I had a stroke. Since then, I have tested positive for APS - twice. I wish you and your son an easy and safe journey through this APS minefield and you must believe that your gut instinct and knowledge are stronger than the doctors. This is a major example of when Mum knows best! Hugs to both of you. Larraine x

  • OMG I'm so sorry to hear this, I hope you are doing ok. Thank you so much for sharing your story.

  • My Specialist who is world class told me once that once you have APS you have it for life.

    I think the advice to get a second opinion is the best.

    Be very careful about stopping Warfarin, Angelpaws experience is not an isolated case.

    Let us know how things go xx

  • Sue ...which specialist are you seeing..any recommendations?

  • Hello darc333! Ditto to SueLovett above. I have been told that once you have APS it is for life. I too would consider all the facts very carefully before doing anything if it was me. A very difficult decision to make. My advice is don't be rushed into anything that you don't feel in your heart of hearts is right to do. Keep us posted and good luck! xxx

  • This must be a very difficult time for you and as a mother my heart goes out to you. If my math is correct your son is now 20 and I suspect just wants to be a normal person. He wants to be rid of the shackles of warfarin and all that it entails - am I right?

    Do you have any influence in this decision or is this going to be left entirely up to him? I do hope that you can speak with his Doctors and or go with him. I know what its like to try and get a son of that age to listen to you without making it sound as if your nagging! Im so sorry I can feel your worry and would feel exactly the same.

    Perhaps just let him read this thread so he can see for himself that the adult thing to do would be to get a second opinion from an APS specialist. If he is just rebelling about the restrictive life style perhaps its time to talk over all the options of his treatment to see if there is another option of anticoagulation that might suit him better - anything rather than give it up altogether.

    Know that we are all here for you both and please keep in touch. x

  • Boy, you hit the nail on the head...I do feel that I'm nagging him with his health, he is very good & strict with keeping up on everything he needs to do, but I know when the Hemo put the idea in his head, he was really thinking not having to deal with INR would be great. I've discussed with him that they have machines for testing at home,, but at this time his insurance doesn't cover it. I told him that after everything he has endured & overcome, taking a daily blood thinner & dealing with INR's is a small price to pay for could happen if things went wrong.

  • I want to thank you all so much for replying! When a Mom gets that gut feeling its great to know that I'm not just be over protective. When the Dr. mentioned this at the last appt. I asked him "what if his blood starts clotting again?" He replied "well he's been through this before, so he will know that he needs to get to a hospital." I was like WHAT...when he was being life flighted, it wasn't due to symptoms he felt from his blood clotting, it was from his kidneys shutting down..I think we will be finding a new Dr. this has been hard, my son had amazing Dr's from a childrens hospital, but now that he is an adult, we are having to find adult Dr.s. not a easy transition when your from Montana. His old dr.s were in Seattle, WA. We have found him a great kidney doctor...but so hard to find someone with knowledge of APS/CAPS.

  • Perhaps someone will come on here and suggest one. We have many from the USA.

    Hang in there, your son sounds like a sensible chap and Im sure that in the end he will listen to you. x

  • Dr Kathy Hassell, hematology at the Univ of Colorado, can give you an excellent second opinion. He wouldn't need to see her very often, just answer the question should he be on warfarin for life?

  • Thanks so much!

  • Every year in London the HSF charity hold a Patients Day where many of the specialists come to talk to the patients about the latest developments with the condition. This year the specialists consisted of, Prof's Hughes, Rahman, Regan, Hunt and Khamashta. Today I was looking through the transcript of that day which you can purchase from the charity and its available on their website. You can also watch a video of it on here and on the website too.

    I came across a question which was relevant to this thread. the question was:

    Does it ever actually go away?

    No. The antibody might go away but not the disease. You are still at risk.

    One of the worries we have faced is that in one or two patients who have gone negative, where we have stopped the anticoagulant, they have had another thrombosis. We are very ignorant about what to do in that situation.

    So that is from the horses mouth! If I was in your shoes I would get a copy of that transcript and use the info to help you with your Doctor.

  • Great advice, I have given the film from the patient;s day to every medical doctor/team involved with either myself or my children including the GP and in fact even my children's school! Mary F x

  • Thank you so Much!!!

  • Remember--blod clotting mechanisms are many and complicated. The cardiolipin antibody test is probably NOT a direct measurement of an APS vector, but rather a measurement of an associated blood change which usually occurs concurrent with APS. Eventually, as research progresses, more accurate tests and understanding will arrive. But for the time being -once positive, always positive. Find a new doc if you MT heme remains relunctant to alter his recommendations.

    I was first diagnosed with thrombocytosis in 1988 after a scary series of DVTs. My platelet count was then over 800K so that diagnosis seemed obvious. I went on warfarin and the DVTs went away and my life returned to normal. Then the platelet count returned to normal and I was taken off warfarin,. The scary, horrid migraines started immediately. Something deep inside my head knew the warfarin, despite it's reputation as " killer Coumadin," was a good drug for me. My diagnosis was not changed to APS until 2000 after years of head aches, a hole in my visual cortex, and lots and lots of scary strokes.

    I was lucky. They will now have to pry that warfarin bottle out of my cold, dead hands.

    Gina

  • I've never heard of APS just going away either. Antibody measurements may have improved, but that's no guarantee is will stay that way. Ask the doctor if he would put in writing, that it's his recommendation to stop blood thinner, in his opinion your son is safe from a clot. I'm sure he won't.

  • We had another appointment with this Dr. on Monday. This is his plan: Repeat anticardiolipin antibody & antiphospholipid antibodies. If negative, he is to stop Coumadin & start 81 mg of aspirin daily. (this was in the records we requested) I told him I wasn't comfortable with this, I told him about all the research I've done on this site, & others. I told him that this does not go away, and questioned about seronegative APS. He told me that you have to be positive at least twice to be diagnoised with APS, so he can't figure out how someone could be diagnoised with Seronegative. He said it is crazy for someone to take medicine if they don't need it. I said, what if he has another episode? He said well he might, but who knows, it might be 10 years before that happens, & Coumadin is to risky. He then told my son, I will call you with the results of todays labs, & if they are negative, stop taking them. I see no reason for you to come back every 6 months to be tested, because I could test you in 6 months & you might be negative, & then the next month if you were tested you might show positive. He then said he should maybe take a low dose apirin daily to relieve his Mother"s fears.

  • How can this Doctor be so flippant? Perhaps if it was his son or mother he might not be! This is the problem with having a diagnostic criteria which has mainly been designed for research where Doctors are told to stick with them rigidly and they dont have the freedom not to do so.

    If they are questioned, because of a problem, (I bet for insurance etc they would have to justify the decisions they have made), they would argue the diagnostic critera state you MUST have this and that but in MY opinion they put peoples lives at risk when you are seronegative.

    Do you have to have a Stroke before anyone takes you seriously?

    Personally I would ask this Doctor to put in writing that he is taking personal responsibility for the consequences of taking you off of coumadin if your results come back negative and take a copy of the Patients Day transcript with you which CLEARLY states that seronegative patients should be treated the same as those with positive results. I bet he wont put that in writing!

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