APS Specialists in New York City and Raleigh,NC

[loretta1106]

I am looking for APS Specialists in New York City (Manhattan) where I live.

My daughter now lives in APex, NC near Cary and Raleigh and I visit there often. I'm also looking for a specialist there.

Thank you.

Loretta

[Jean_12]

Hi Loretta,

I just moved from Cary (which is right next to Apex) to Charlotte. I just found out that Duke has an extensive hematology program (They have about 12 hematologists) and are currently doing two research studies on APS so it looks like I'll be heading back there for doctor appointments. You may want to check them out. I went to one hematologist at REX but she didn't seem to know much about APS.

[loretta1106 in reply to Jean_12]

Thank you so much Jean for the information. Would you please keep in touch with me to let me know who you see and what you think of them. I'd really appreciate. I want to spend more time near my daughter but feel like I'm so unfamiliar with any doctors there.

***Edited by Admin. Please don't post identifiable info for your own safety but send PM messages.***

[Lure2]

Hi Loretta,

I am sure there must be a Specialist at Manhattan. I have heard someone here talking of a Doctor who knew HS/APS around NY-city.

Kerstin

[loretta1106 in reply to Lure2]

The only one I've been able to find is Doruk Erkan at Hospital for Special Surgery.

[Lure2 in reply to loretta1106]

I have heard of that name several times here from members. Good or bad I do not remember!

Kerstin

[loretta1106 in reply to Lure2]

He was recommended to me then I was told he was no longer recommended by this site.

[Lure2 in reply to loretta1106]

That can be the reason why I remember his name.

Kerstin

[loretta1106 in reply to Lure2]

🙂could be

[KellyInTexas Administrator in reply to Lure2]

👎🏻👎🏻👎🏻👎🏻

Especially for patients who are not persistently antibody positive or who do not have " antibodies of " at least 40 or higher, but it really takes a number of 70 to get my attention."

He unashamedly spoke ill of professor Hughes with regard to allowing his criteria to be " too broad" for diagnostic inclusion.

He personally sent me away and " undiagnosed me" and recommended immediate withdrawal of Coumadin. My hematologist in Texas took his recommendation and dismissed me as his patient.

Dangerous business for a large majority of APS/ HS patients. Thankfully my internist back in Texas thought he was wrong, ( I met the Sidney revised criteria easily) and continued my Coumadin for two weeks until I got to London for the worlds premiere expertise consult, and then I came home with the proper clinic letter and recommendations ( a far higher INR of " at least" 3.5 as opposed to the 2.5-2.8 I had been set at) plus bridging of LMWH .

[Lure2 in reply to KellyInTexas]

Hi Kelly,

Yes that is right! I know something was really wrong.

Thanks for that and take care you now!

Kerstin

[KellyInTexas Administrator in reply to Lure2]

Well, very interestingly... just this morning I got a letter via email from professor Hughes personally that when his USA patients ask who he would recommend for APS specialists he usually recommends Drs Lockshin and Erkan. ( Loretta, if you are reading this thread, Dr Hughes was kind enough to lend a quick ear on my case, and sat in on my appointment with Dr Jordan. ) when I had asked Dr Jordan for a recommendation of an APS specialist, she recommended Dr Jill Schofield of Centennial Colorado. Dr. Schofield will be a better diagnostic match for me as she has an interest in dysautonomia.

I never shared with neither Professor Hughes not Dr Jordan any disparaging remarks / opinions shared by Erkan regarding Professor Hughes work. Simply petty and silly waste of time. However, I am sharing it here because I believe it represents a potential safety concern.

I'm no longer sure what to think other than I trust my personal experience. I feel dr Erkan must do very good work in several areas. Again, rituximab trials was one, height persistent titers, and I believe success in pregnancy clinics. He is fairy young- I predict great success somewhere down the line. It really needs to happen.

[loretta1106 in reply to KellyInTexas]

Wow--I think someone very famous has to be diagnosed with APS for wider research and attention to APS. It's so hard for those of us to get great care. LMWH Is that lovonox bridge and when do you have to take it?

[KellyInTexas Administrator in reply to loretta1106]

Well, like I'm sure you would agree, wouldn't it be amazing if we could wave a magic wand and make APS/ Lupus/ etc all just go away...

Maybe some day science will advance to this level.

Until then I fear some unfortunate famous person may indeed discover they have APS and advocate for it and shed some light.

If you read the thread ( s) above, ( I hope you did, to Kersten- I think I am understanding correctly that you did) you will understand that after being seen by Dr Erkan, I quickly went to London Lupus center. Dr Natasha Jordan was my consulting Rheumatologist, buy Dr Hughes happens to be in London and in clinic, and very kindly lent an ear on my case and co- consulted in on my case.

Yes, I use exoxaparin ( Lovenox but Fragmin ( dalteparin is equally fine. It ones down to what your hematologist is comfortable working with day in and day out.

I Bridge if I'm at 2.5 or lower if I do not have an active DVT, and I Bridge if I'm T 3.0 or lower if I have an active DVT.

Yes. I have a hematologist.,Two actually. One in Texas and one in Princeton New Jersey. ( daughter in PhD program here so we bought a second home here. Our family is here off and on during summer months for family time.) I'm here now, actually. His name is Dr Thomas Blom . He's quite good! Rutgers in New Brunswick has an entire heme floor with a thrombotic disorders unit...

[Wittycjt]

NYC Dr Caroline Cromwell 212604-6057. Someone replied with this on one of my post, I do not have personal experience with her. Good luck

[loretta1106 in reply to Wittycjt]

Thank you.

[KellyInTexas Administrator in reply to loretta1106]

I have also heard good things about dr Cromwell, and after reading my response to you this morning, I might consider her an option, depending on how highly your antibodies are.

[GinaD]

I went down to duke when I had my hip replaced. I chose Duke because they had done joint replacements on APLS patients before. Hematologist I consulted with was not that helpful. Because my blood work at the moment was negative, and because the positive blood work which was taken the year I had all those mini Strokes had been lost, The hematologist opined that I had never had APLS. He urged me to come off warfarin. You could characterize my response as visualizing a woman shaking her head in fear and walking backwards saying "no, no, no!"

My medical history can be complicated, and my repeated DVTS and mini strokes could indeed stem from a different cause. But warfarin works for me and I want to stick with what works-which is a reasoning that hematologist refused to acknowledge. Since 1986- on warfarin no symptoms. Off warfarin, clots.

Of course my hip replacement and the bridging on and off warfarin went fine. In fact, should my other hip or knee require surgery I might return to Duke.

[MaryF Administrator]

Please let us know how it all goes once you have identified who you are seeing! MaryF

[KellyInTexas Administrator]

Loretta, I have personally had an appointment with Dr Erkan. I saw him for a consult in how to manage maintaining a stable INR- I kept needing an ever increasing higher dose of Coumadin. My Texas docs were baffled. They asked me to seek out an APS specialty consult.

He is missing a huge comprehensive piece of the APS puzzle. He is singularly focused on the antibody number. If you have titers over 70 for B2gp1 and aCL, then you "pass" his self proclaimed criteria. He said 40 would do but " 70 really gets my attention."

He does not believe in sero negative APS.

He and Professor Hughes differ quite markedly in their thinking, and he told me this very matter of factly. I would say Dr Erkan offers many great gifts to the study of APS and rheumatology. He works with Retuximab trials. He contributes to great pregnancy and APS success. It's just that it's a limited focus. There is a very broad category most of us fall in he is willingly and stubbornly and DANGEROUSLY turning his back to. I do not understand his thinking but he kept referencing talking about the criteria revisions.... those blasted criteria revisions.

I would say if you fit these parameters- then perhaps he could be the doctor for you. But be warned if you ever go sero negative. He will recommend you stop all anti coagulation therapy the way he did me.

My internist did not listen to him . He kept my Coumadin monitored for two weeks while I got to London to be seen by the Dr Natasha Jordan, a consulting APS specialist rheumatologist at the London Lupus Center, the one Professor Hughes founded.

As it turns out, my INR was not set high enough. I have an aggressive case. That's why I needed so much Coumadin. ( my docs in Texas simply didn't understand.)

My antibodies are positive again. Just as predicticted would happen. Nothing eyebrow raising at all- just mildly positive as before. But boy do I ever clot like a woman possessed! Dr Hughes is absolutely correct. Dr Erkan is a little presumptuous /arrogant not to not listen to the man who might just know a little something about Hughes syndrome, no?

Erkans partner, Dr Lockshin, I'm not sure if he follows the same thinking?

[loretta1106 in reply to KellyInTexas]

Thank you so much Kelly. I will definitely not see him. Arrogance I don't need. Dr. Lockshin retired. He is who I wanted to see originally.

What INR did they recommend? My former internist had me at a 2-3 range but after reading many recommendations here, I tried to keep my range with a new MD at 3-4. But when my regular internist is not available, I have to be more assertive with doctors who don't really understand APS.

Keep in touch and let me know how you're doing.

Who are you seeing now? And do you see a hematologist.

[Wittycjt in reply to loretta1106]

Loretta did you see Dr Cromwell and how did it go?

[loretta1106 in reply to Wittycjt]

Hi. I don’t know Dr Cromwell. Where is he located ? I actually started seeing Dr Erkan at Hospital for Special Surgery in NY. I only see him every 6 months. I also see a Dr Askanase at Columbia Presbyterian Hospital in NY. She’s the lupus specialist w knowledge of APS. Dr Erkan is the only one who’s told me to keep my inr at least at 3.0.

[Wittycjt in reply to loretta1106]

It was here in this post I thought you were going to see her, I must have miss understood, apologies

[albie360]

Dr Doruk Erlanger at Hospital for Special Surgery is internationally recognized as a Doctor Scientist for APS. He is also a caring doctor.

[albie360 in reply to albie360]

Make that Erkan