Advice re DVTs, Hughes Syndrome

[MajorKrimes]

I have DVTs, major clot, posterior left knee. Just diagnosed w/ Hughes Syndrome complication (Hughes-Stevin?) . What type specialist should I see? What treatments may I expect? Taking 20 mgs Xarelto dail.t ...probably for life?

[KellyInTexas Administrator]

Hello major Krimes-

Welcome to our humble detective team.

Where do you live- USA? Are you in the Boston metroplex? ( asking to ascertain what specialists you have access to.)

Just going off your jacket!

Usually rivaroxaban ( xeralto) is not used for multiple clots in APS.

Usually rheumatologist, hematologist are the mainstay of APS. Depending of the patients personal complications ( if any) , additional specialists will be brought on as needed.

In order of most prevalent:

1. Neurologist

2. Gastro

3. Cardiologist.

( 2 and 3 might be a tie.)

Nephrology, liver specialists, ... all can come into the picture. Even adrenal specialists.

And of course pregnancy complications are paramount, but often in a league of their own.

[MajorKrimes in reply to KellyInTexas]

Thank you I’m in Nashville/Chattanooga TN area. Previously Boston ( good detective work!!). Xarelto prescribed in Feb 2020 discovery of DVTs. APS just last week by oncologist . So need Neurologist? PCP & present Oncologist seem oblivious. So time is of the essence.

Thanks for any help!

[KellyInTexas Administrator in reply to MajorKrimes]

the-rheumatologist.org/arti...

One more article that might help.

This was written by Professor Hughes .

I will also tell you that new research is currently underway by a fantastic team at the uni of Michigan led by Professor Jason Knight ( Rheumatologist.)

[Polaris_Ab]

Hi MajorKrimes,

Just want to make sure you are getting the right treatment for your particular health condition. Is it Hughes syndrome (APS) or Hughes-Stovin syndrome?

I don't know much about Hughes-Stovin - it seems that there are similarities with Hughes (APS) (e.g. increased propensity to clotting), but also differences (e.g. aneurysms as a hallmark of Hughes-Stovin). The best treatment for Hughes-Stovin may also differ from that for Hughes (APS).

Best wishes.

[MajorKrimes in reply to Polaris_Ab]

Hughes syndrome only; nio mention of Stovin

[KellyInTexas Administrator]

ard.bmj.com/content/78/10/1296

Hello Major,

Here is info you will need to see where your hematologists and rheumatologist should be basing their decisions off of.

I am sorry to say, I haven’t a clue where to direct you in your area in finding a hematologist who is clued up in APS best practice.

As you can see, rivaroxaban would not be the choice in your case for more than one DVT unless there are extenuating circumstances only your doctor is aware of.

Each patient is is their own “unique” victim of the crime of APS, and each crime scene is unique!

[MajorKrimes in reply to KellyInTexas]

THANK YOU! I've asked my PCP and present Oncologist for advice but I get the feeling they are clueless. I am reaching out to Lahey Clinic in Boston and Vanderbilt in Nashville but don't have responses yet. I really appreciate your thoughts!

[KellyInTexas Administrator]

ncbi.nlm.nih.gov/pmc/articl...,

I looked up “Hughes-Stovin” , as you mentioned “Steven?” With the question mark added in your initial inquiry.

I wanted to confirm that Dr Hughes in Hughes - Steven Syndrome is a different doctor than Dr Graham Hughes , who discovered the Antiphospholipid syndrome.

[MajorKrimes in reply to KellyInTexas]

It’s Stevin. Spell check changed it. Has a mind of its own if I don’t double check. Thanks for your help! I know it takes your time and I’m grateful. 😀

[KellyInTexas Administrator in reply to MajorKrimes]

STOVIN...

So if you have Hughes - Stovin syndrome, you do not have Hughes/ Antiphospholipid syndrome.

I need you to confirm which disease you have.

[MajorKrimes in reply to KellyInTexas]

From last feb 2020 confirmed DVTs. Then last week told APS. He droned on re Hughes-Stovin but he was in a real rush. Over one hour late getting into exam room. He acted very non caring. I shudda taken my tape recorder.

Thanks for your patience. I’m seeing Dr tomorrow. Getting all my records too.

Likely go back to Drs in Boston when gets sorted out. It can’t live in the cold again!

Thanks! Really appreciate your advice.

[KellyInTexas Administrator in reply to MajorKrimes]

Oh, I see.

We are just trying to get you to the correct forum. Help for APS would not be relevant to another disease process, and could, in fact, really be counter productive.

Please confirm with correct doctors.

I have never heard of the other condition. I can see where that could be confusing.

Do you not have blood lab work indicating your APLS antibodies?

[MajorKrimes in reply to KellyInTexas]

Yes to the bloodwork. That’s what he based his diagnosis upon. Then rambled on about what I’m beginning to believe are hypotheticals. The quality of physicians in Boston is far superior to Chattanooga, unfortunately. I’m also considering Emory in Atlanta.

Thanks again. Your insight and advice are most valuable.

[KellyInTexas Administrator in reply to MajorKrimes]

You know, Duke/ chapel hill University of North Carolina has a very good Dept ( Hematologist Dept- lead physician is Dr Thomas Ortel,- APS specialist. However I’m sure he has team / doctors under him that would be knowledgeable in APS that would be fine, and would consult with him.

That’s closer to you.

I would consider this an option.