Question on specialists for extremely high APS auto antibodies

[new2aps]

Hi - I am new here too and recently diagnosed with APS after vasc surgeon finding a blood clot in an artery in my arm. Now both my cardiolipin IgG and my beta 2 glucoprotein 1 IgG are both off the charts high....too high to measure. I am very scared about more clots and symptoms, or worse.

I started yesterday bridging to coumadin and off plavix. I have a hematologist.

I think I need an immunologist? Whom would you recommend in the US? And rheumatologist?

Thank you,

Sharon

[MaryF Administrator]

Hiya, welcome. KellyInTexas will be on at some point and she has great localised knowledge for the USA, and maybe even for your nearest area. Your antibodies may well go down with the right treatment, others on here have similar histories to your own so feel you have landed in the right place! MaryF

[KellyInTexas Administrator]

Hi Sharon,

Where in the USA do you live?

[new2aps in reply to KellyInTexas]

Hi Kelly - I live in central NYS but willing to travel if I need to. Thank you.

[KellyInTexas Administrator in reply to new2aps]

HSS ( hospital for special surgery) in NYC has a specialist APS rheumatology department.

They can help you either find a specialist hematologist or help advise your current one in upstate NY should he or she need anything additional.

It is critical to have a rheumatologist as part of of your APS specialist team.

It may be necessary to find ways to lower the APS antibodies. ( rheumatologist.)

You may ( or may not) find you have a few other autoimmune diseases that tend to together with APS. ( not to worry- they can be managed and usually the same family of medications come into play- DMARDS or sometimes biologics.) This is why a rheumatologist is important.

[MickyPitt in reply to new2aps]

Hi Sharon, I am new to this site but not to APS (was diagnosed almost 30 years ago!). About 15 years ago I had a scare (developed livedo reticularis) and travelled to New York City (I live in Pennsylvania) to consult with a rheumatologist, Michael Lockshin, at HSS (it's affiliated with Cornell), as Kelly is suggesting. He was very helpful. MickyPitt

[Raw57]

Usually a hematologist or rheumatologist manage patients with APS.

[Bobbydoodle]

Hi

My specialist has told me that the best anticoagulant for APS is warfarin so maybe you could ask some questions about medication and if it is correct for your your condition.

[Lure2]

Hi and welcome to or friendly site. We all have APS here like you.

The most important thing we have found after several years reading and learning about APS is to have a Specialist who works with autoimmun illnesses like APS, SLE, Sjögrens, RA etc every day and is very knowledable of our sticky blood and that we need anticoagulation and keep it at a steady rather high sometimes level. The autoimmun illnesses above often go hand in hand and therefor it is important to have a Specialist of autoimmun illnesses who can see the difference. Blood samples are used very often when we have APS.

I can tell you I live in Sweden and have had APS since 2002 and as I had microembolies they could not see them on a Scan. First they thought (a Neurologist) that it was migraine or something. Later on they realized that I needed anticoagulation. That was my lifesaver. I have a Hematologist and a Rheumatologist who are both Specialists. I had a lot of neurological symptoms and they are much much better when I keep my blood at an INR around 4.0. First I did not like to take ratpoison (Warfarin) and how stupid of me as it was my lifesaver as I told you.

I have been tripplepositive (included Lupus Anticoagulant also) in very high titres all the time.

In my opinion I do not think it is so important how high titres there are as they go up and down for many of us. Very important that we do not stop anticoagulation then as this illness will never go away and some Doctors do not understand that we may have 0 antibodies (sero-negative) and think that they may take away anticoagulation. That is very dangerous as we may get clots again. But it may be important if we have one antibody or two or three as they say that there is a greater risque for embolies with all the three of them.

Read also "Sticky Blood Explained" by Kay Thackray. She has APS herself and it is a very good book also for relatives to understand what we go through and to understand perhaps a little more about this rather rare and new illness APS.

So if you have now a Specialist in your Hematologist you can be very lucky indeed.

Stay with us here and I wish you good luck!