Especially to Kelly in West Texas I am in NJ with APS and all those usual add ons like Lupus but -I also have Hemophilia B and Porphyria. I had Dr.Erkan confirm the APS And had to have 3 surgeries last year at HSS for a fracture. I recently read you traveled to London to meet Dr. Hughes and also you travel to Colorado. I assume to try to stay in the states. I also read that if you need surgery you have to go to Duke I believe if you say need a hip.(which I don't -thank goodness.). I don't think you would ever know by looking at me on the outside -it is just all internal. My primary care just passed and I do not really want to be the patient every doctor hates.
Do all of you have any suggestions.?
Dr. Erkan is not too far in NyC but I think I might need someone in NJ. I found a doctor that has APS-diagnosed after a stroke in Med School. but he is doing more
specializations and not yet for th4 general public.
I recently broke my foot and found online that that too I a comorbidity with APS.
To me it sounded like the trip to Dr. Hughes was an assessment and Colorado someone closer.
Thank you All!!!
Susan
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BeachHaven123
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Luckily for you I have a fab hematologist in Princeton! Yay!!!
His name is Dr Blom. I think it’s Thomas Blom.
He has two offices. One in downtown Princeton and one in Plainsboro. He’s very up on APS and understands the ins and outs of it, and it’s tricks “bespoke” nuances that are very infamous just to APS.
He’s connected with the very best hospitals around.
I also try to stay in the states. No one really wants to travel out of the country when they are really sick… but my doctors in San Antonio were struggling to understand the bouncing inr and the refractory clotting.
Where are you in NJ? Our daughter is a post doc at Princeton, and this is why I’m there often and need a heme and standing order for INR.
Our daughter has a good rheumatologist and gastroenterologist. Would you like me to pass on the suggestions for you? The rheumatologist is in Philly I think- with U-Penn. gastro ( 6th sense for autoimmune diseases) is in Princeton.
Post script: London lupus centre was at request of my doctors in SA to help get a set of expertise eyes on my case. It was a Expert consult. ( to see what might be missing. It was in fact, that the inr was set too low.
London: Also consultant with Hematologist Hannah Cohen re: warfarin failure at request of my GP while I was between hematologists, as she said I has absolutely not a candidate anymore for warfarin. She wrote absolute instructions/ reports and specifics for exact dosing of exoxaparin, clopidogrel, and statin, and testing intervals, etc- and extensive blood draws ( same by dr Hughes and his colleague) -
She also referred me to a thoracic vascular surgeon the next day to test valve competency to rule out other reasons for refractory clotting.
Jill Schofield was to trial high dose Apixaban becaause I kept clotting through warfarin and enoxaparin at high doses. Also to check for mast cell activation syndrome- which I did have- and management for. It was not a consult. That was actual treatment. Also consult and diagnosis of Ehlers Danlos. This was very specific.
You are a life saver. Thank you! I have seen Dr. Erkan originally and he is great for pregnancies. I wish I had known - I had 4 misses. Maybe I could have avoided. I also have Ehlers Danlos-IBD-and a stint at Mskcd and Anderson in Texas. Multiple
PE's and DVT's.
My INR is all over the place. I carry a stat ord'er with me. And my last surgery was a disaster with bleeding 3 feet in the air -and -'We have never seen that before.'. I was an absolute mess. But I am so happy
you have someone in Princeton-I will make an apt. NJ toyed with the idea of replacement
of Factor x which levels out the episodes and INR but decided no bc of the APS. That they
really do not like.
My rhummie moved to Arizona and what other names you have tried would be greatly
appreciated! I am also an adoptee and have been to court several times in order to try and
obtain health and family history but no luck.
I am down on the shore about 40 minutes from Princeton and we just had a cyclone bomb
of 2 feet of snow. I have not heard if Princeton escaped or not. Skiing is busy.
Thank you so much again!
I look forward to the other names when you get a chance.!
You should not be on Apixaban when triple-positive. Of course you feel better on it as you had quite too low INR for Lupus Anticoagulant with the Warfarin.
It is your life but if I were you I would consult a Specialist who has the knowledge to give you a correct anticoagulation for your 3 positive antibodies.
Please realize I had already failed other regimens- this was very high dose- plus clopidogrel and stated. My doctor was in contact with me - available at all times as it was a trial. My regular hematologist was in agreement to at least try. We knew it involved some risk but back up plans were in place.
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Anyone know a GP in Salisbury who has APS experience?
Finally got the Hughes diagnosis!
Hughes syndrome and congenital hole in heart
Needing answers re: Hughes Syndrome 
Is there a link between lupus & hughes
