Confused

[mcjm]

When I was pregnant with my second child I was admitted to hospital twice towards the end of my pregnancy with chest pain. I was found to have a ruptured sinus of valslava and pericarditis. Then when my baby was 9 months old I suffered multiple pulmonary embolisms. Following this I was sent to a private hospital to see a heart specialist who indicated that I may have an autoimmune disease following these symptoms and also the fact that i was not recovering from the embolisms as expected. I was in a flare of Lupus and could not walk or even hold my baby due to the pain. I am now on Warfarin for life but told that I am not suffering from Hughes but yet have an INR range of 2.5 - 3.5. The hematologist wants my INR above 3. I am confused as they never tested me for it as I would have to have come off my Warfarin for this test yet I remain L/L on this medication alongside other Lupus medication. Can anyone help me with this as I feel I have all the symptoms of Hughes when my INR is not in range?

[MaryF Administrator]

Hi there, do you see an actual specialist off the UK recommended list? Also to be clear it is possible to have Hughes Syndrome/APS and be seronegative for it, to not pass the tests. I am glad that you are being monitored on anticoagulants. Please look through all the pages on the charity website, there is so much information on there, and do also feel free to ask anything on here, this is a supportive place to be. MaryF

[mcjm in reply to MaryF]

Thank you for your support but unsure how to check this list. I do see my Hematologist every six months and there is excellent communication between her and my Rhumatologist. I feel I get excellent care but confused as I tick all the boxes, as you say it is possible to be seronegative for it and I must fall into that category.

[MaryF Administrator in reply to mcjm]

It does sound like you have excellent care, and the fact that you have one of each specialist and that they communicate very well about your case is good news indeed for the best outcome. MaryF

[Lure2 in reply to mcjm]

I am on warfarin and I get tested for the antibodies twice a year (now for 12 years). You can get a false answer if you test for Lupus Anticogulant when you are on warfarin but the others are OK.

Kerstin in Stockholm

[Manofmendip]

Hi

I agree with what Mary & Kerstin have told you.

Here is the page of the HSF website that lists specialist consultants:

hughes-syndrome.org/self-he...

Where are you from?

Dave

[mcjm]

Thanks Dave, I am from Scotland (near Glasgow) and none of my consultants are on these lists. Lure, I am interested but do not know the difference between lupus anticoagulant and Hughes? I am most definatley diagnosed as having Lupus ( speckled they told me). More research is needed for me!! Thank you.

[Preserved in reply to mcjm]

Hi, sorry for all you are going through. The Lupus anticoagulant antibody is different from the disease Lupus. It is one of the 3 antibodies they test for when they are testing for APS. They test for

Cardiolipin antibodies

Anti Beta 2 Glycoprotein and

Lupus Anticoagulant Antibodies.

A positive test for one or 2 or all 3 would mean you have APS. Also as Mary said some do not test positive for any of the above but have the symptoms and are therefore seronegative. It would not be unusual for you to have APS as it does occur secondary to patients who have Lupus.

All the best.

[mcjm]

Thanks Preserved, all this medical jargon can be so confusing!!! The brain fog in itself is hard to get your head around and communicate effectively!!!

[Lure2]

I agree acompletely with what Preserved has said if you ask me. Now I did not have to answer your question. Already done. Good!

Good luck and stay on here.

Kerstin

[mcjm]

Thanks Preserved and Kerstin, I will stay on here and update you all as I am going along! The operation for my heart will be this summer providing my lupus is controlled enough.

[mcjm]

Thank you for your info, this is interesting. I will need to speak to my rheumatologist regarding the B2GP1 test. I haven't been asked about other drugs, I will be giving a list of my new symptoms as I feel that the MTX is not keeping my symptoms under control whether or not this is lupus or APS I could not say! Thank you!

[Lure2]

It is good that they keep your INR steady at at least 3.0 or 3.5. I have also Pulmonary Hypertension and leaking heartvalves. I am not supposted to have Lupus only APS but you can have pieces of Lupus I have been told by my Rheumatologist.

I am so glad that you have so good doctors taking care of you. Please let us hear from you again and hear how it goes.

Kerstin in Stockholm

[mcjm]

My ruptured sinus of valsalva is of concern to me, this has been like this for over three years now. The private consultant said that my heart will begin to fail over time and that one side of my heart will be become large and over worked as it pumps the extra leaking blood through my heart and the other side will become underworked as it leaks the blood. When I seen my regular heart consultant, he commented that no operation will be given and my heart is coping ok, I dont know what to think anymore!! the research that i have did myself states that it must be operated on urgently as it can cause premature death!

[Lure2]

Hi again,

I only wish that you have doctors that really know APS! That is very important! As I live in Sweden it is difficult for me to know what knowledge of APS your doctors have.

Anyway try to get info so you get the best doctors that really understand APS and what you now need for the future. We really sometimes have to fight to get this help! I have also leaking heartvalves here. I am 70 but I think I have good doctors that understand what I need.

Take care

Best wishes from Kerstin in Stockholm