United States APS Doctor Specialist List

[baldboy67]

I had one thrombosis event (CRVO) in May 2022 and then was diagnosed with APS shortly thereafter. I have only been on aspirin, which was input from an ophthalmologist, a hematologist, and a vascular specialist. Now the hematologist wants me to go on Warfarin. I have concluded that this hematologist is not up to date on anything related to APS and would like to find a qualified doctor/specialist who is very familiar with APS. I am not against Warfarin as a whole, but I am wary about all the longer-term effects due to Vitamin K deficiencies (osteoporosis, calcification of soft tissues, and dementia). My current hematologist seems to be reading from his textbooks and has no recent knowledge of dietary changes.

I know this is primarily a UK-based support group, but I was hoping that someone might know a credible list of doctors in the USA that have working knowledge of APS. The one APS support group I found (apsfa.org) has a list of doctors, but it seems to be a stale list and when I look up these doctors, most have no specialist experience with APS.

Thanks in advance.

[lucaldo]

I've been on warfarin for 11 years and never stopped eating my greens! I'm just consistent with my intake. Never caused a problem and been more or less the same warfarin dosage for these years.

[Tofino5]

Dr Jill Schofield in Denver CO. She is amazing, extremely knowledgeable and has trained with the best, Dr Hughes included. PM me if you would like details or experiences. Anita in CO

[baldboy67 in reply to Tofino5]

Thanks Jill. I live in Illinois, so Denver is a bit far away. Sounds like I need Dr. Schofield equivalent near to me.

[Sand1985]

Currently warfarin is the only approved treatment for aps. You may be on other types of anti-coagulation for more complex cases but warfarin is the approved and best choice.

In terms of vitamin k - you can eat the same greens you always have but keep to a constant amount week on week. And your warfarin dosage will accordingly be prescribed. So I wouldn’t be concerned about that, here in the uk we get weekly inr testing done but this depends if your inr fluctuates a lot. Mine certainly does so doesn’t look like that will change anytime in the near future.

[baldboy67 in reply to Sand1985]

Yes, the consistency is what I have read over and over. However, my last visit where Warfarin was proposed, he discussed reducing Vitamin K foods before going on Warfarin. I would rather find a doctor that understands that consistency is the key.

[GinaD]

I have been on warfarin for 20+ years. Warfarin saved my life as I had progressed to strokes before diagnosis and treatment. I eat greens every day and am on a fluctuating warfarin dose to compensate for my body's attempt to keep my INR low. The wonderful doc who diagnosed me is now retired. Which US state is home?

[baldboy67 in reply to GinaD]

I live in northeast Illinois, outside Chicago.

[Pooky7]

I too have been on Warfarin for 15 years. Eat lots of green daily and consistently. Yes. Finding an APS Dr is difficult. I am in MN. Lived in ND. Everyone reads from a book. I unfortunately educated myself. Don’t give up searching, as you do need this knowledge and guidance. I am also hemophiliac B—a bleeder. I am strange. Lol

I do see a naturalpathic doctor and have been healthy. Most hematologists focus on cancer and don’t want to see me

[Tennisbum in reply to Pooky7]

Hi

I was just considering a “bleeder” t shirt but came across this instead. I , also , have been diagnosed with HemeB and APS and thought I was the only one ! I am an adoptee and have no medical history so between that and APS just hemorrhaged all over the place for most of my life. Undiagnosed.

Thank you for posting !!!

Did u always know? Maybe a good pediatrician or

In the family?

Best

Susan in NJ

[GinaD]

I once read, and echo, the suggestion: Adjust your warfarin to accommodate your VitaminK uptake - not vice versa.

[Piscesdreamer]

hss.edu/lupus-aps-center-of...

also Dr Jason Knight at the University Of Michigan APS Lab.

medicine.umich.edu/dept/int...

[KellyInTexas Administrator in reply to Piscesdreamer]

FYI: I went to university of Michigan in December 2023. Dr Jason Knight is no longer seeing patients himself, but Dr Ray Zuo is. ( they all do discuss cases together.)

[KellyInTexas Administrator]

University of Michigan- might be closest to you- look up knight Lab - easy airport to navigate

Dr Ray Zuo- see if he can help you find a local heme in your state who will follow his recommendations for you.

[baldboy67]

Thanks for all your comments and recommendations.

I contacted Dr Jill Schofield to see if she knew of a colleague in the Chicago area. Her office responded saying she did not know anyone in this area.

I already had U of M, including Dr. Ray Zuo on my radar. I am glad to hear someone has seen him. This is within driving distance for me.

Has anyone ever ventured to the Mayo Clinic or Cleveland Clinic with any success? Both are within driving distance, albeit a longer trip. I have a colleague/friend who has long COVID symptoms (not APS) and has had good interactions and some good treatment from theMayo Clinic.

[BTR1963]

I can’t help you with US doctors, but I had a DVT, was put on warfarin for 6 months and then taken off it, and told to take Aspirin, despite testing triple positive for Antiphospholipid antibodies.

I then went on a 4 hour flight to Cyprus and ended up seriously unwell with numerous clots in my leg. I was in hospital for 5 days.

I’d take your doctor’s advice and go on warfarin.