Sticky Blood-Hughes Syndrome Support

Dr. Jill Schofield...Not Taking New Patients

I called for an appointment today and was told the disappointing news. Dr. Schofield's waitlist is 2 years long and she cannot take new patients until further notice.

Thought you'd like to know...

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That's a disappointment-can she recommend someone else nearby?

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I was told she is one of only two APS specialists in the US. They did have a recommendation for a hematologist, but my primary doc gave me a referral.

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I hope some of the other US people on this forum may be able to help with suggestions. I don't have an APS specialist per se but I do have a great Rheumy and Haematologist that I see on a regular basis. Until I landed in their laps (so to speak!) I had a very frustrating time trying to get diagnosed and treated.

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I don't have a firm diagnosis for APS yet, which is why I want to see the hematologist right away, instead of waiting for the LA retest in 12 weeks. All my other tests are normal, thus far. I'll report back after I meet with him.

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Who did they recommend for a hematologist? I’m in dire need.

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Dr. Schofield's office recommended the Cypress Hemotology Group in Colorado. You are in Texas, right?

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Yes, I am. I have a specialty heme In Florida. I just wasn’t what dr Schofield was recommending as far as a Hematologist.

I had my first appointment scheduled for July 26th of this coming summer, but I think it’s being brought forward. Last week I called to confirm ( because I had it written down on the 28th which is a Saturday so I knew something was wrong- ( on my end) I had made the appointment in early spring- at that time a 14 month wait... but they said to move it up a little. I’m waiting on the new appointment time. ) They said they were rearranging things.

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Just to be clear...Someone on Dr. Schofield's office staff gave me the recommendation. She emphasized there were only 2 APS specialists in the US. Too bad a doc can't apprentice with her so her practice can take on more patients. I don't know if that's even reasonable, but cloning her would be the better solution!!

Good for you getting an appointment!

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Just wondering — what is her criteria for an “APS specialist?” I was diagnosed and, for many years, treated by a hematologist in the Cinn Ohio region — Dr. Winkelmann. Then, tired of driving the 4.5 hours one way to visit, I moved my maintenance to my local hematologist’s practice which has, in itself, changed when one retired. There certainly are doctors who are not “up” on treating APS. But many hematologists are. And one side note — I did — one time!— consult with an APS Action member doctor at Duke Uiversity. Due to the malfeasance of local docs and the — understandable! — loss of old fashioned paper records by the Cinn doc wiith whom I did not consult — all the old, positive blood test results had been lost. So, the Duke doc looked at my current “boring” blood work and concluded I did not have, and probably never had, APS and he urged me to come off warfarin. “No. no. . No . . No . . No.” Back to my local heme who concludes that since I’m doing fine on warfarin, then the risks of discontinuing meds seem higher then the risk of continuing.

So there you have a contrast between one “APS approved” specialist and an “ordinary’ hematologist.

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I have no idea what her criteria is...and remember, this is her office staff making that claim, not Dr. Schofield.

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who is the second one, if one is Dr. Schofield?

and I agree with GinaD's question about criteria...I have an apt with a rheumy who has at least co-authored a paper on APS. I will let you know afterwards if I think he is up for the job, but the person you spoke with might have an overly tight definition of "specialist".

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You could call her office and ask...I have no idea!

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There are more than one APS specialty in the USA. :

The big three are:

West Coast California Rheum Los Angeles and I’m blank on his name at the moment. He is tighter on clinical criteria that Hughes thinking . From what’s been reported back to me first hand. I’ve not ever seen him. Oh- Daniel Wallace! That’s it.

Second- Jill Schofield. This is absolutely the best. Professor personally recommends her. I havebitbin my clinic letter.

Third. NYC. Dr Dorak Erkan. He INSISTS on persistent and high titers. He likes to see them 70 or higher. I saw him initially when I was first diagnosed. ( only one DVT at that time- early days ) I can tell you first hand. He was convinced my arm DVT was from a long haul flight to France even though I told him the pain began a week before flight. I was sero negative at his clinic- first time it had happened. He also told me he disagreed strongly with Professor Hughes as far as allowing the criteria to be too generous for diagnosis. ( despite ITP, seizures, multiple miscarriages, other classic APS complications, two mildly positive APS blood tests 12 weeks apart, a positive confirmed diagnosis in Texas, my mom’s history with multiple clotting events/ PE’s and death as a result.

He told me I did not have APS, and sent a letter to my Hematologist recommending I be taken off warfarin immediately. My Hematologist followed his advice- and dismissed me from his practice.

My GP was baffled- took over my anticoagulation and got me to Dr Hughes in London. ( my GP trained in London.)

I was sent there to have help trying to figure out why my INR kept plummeting despite increasing the warfarin. My doctors were looking for advice- not a second opinion as to whether or not I had this syndrome. ( dr Hughes obviously confirmed the syndrome and explained the problem was that the INR was set too low.)

So my point: be careful listening to anyone’s advise telling you they are an ,” APS specialist.”

Also- the Mayo in Minnesota is ok. Access to good reliable info is key for these doctors. Mayo has this. They are going to be sticklers to the .... here is your KEY WORD... revised Sidney criteria. (2006) also called Miyakis - Lockshin. criteria. ( guess who worked under / with him in NYC? HSS? Correct! Erkan. )

(It is possible I have something else going on along side my APS that confused Erkan. I don’t know. My Rheumatologist in Texas was happy for me to get a second opinion. I know time has unfolded and APS titers have come back positive again- certainly low positive. and I’ve reclotted several times. He’s clearly brilliant- and does great research. He’s a mouse modeler and does great work with rituxamab.

Study These two different criteria- the original and revised. Some points of revision are very good. Some may be too strict.

Compare it to the original saporro criteria . ( 1999)

The point: the criteria may be too restrictive. It takes a GOOD well seasoned clinician to balance it. Not always so ,” bookish.”

Attitudes towards these criteria is how you will know your doctors level of knowledge and competence. ( their comfort level in my opinion. )

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My mom also died of a PE. She had DVT's from varicose veins and was on heparin, until she needed dental work & they took her off the medication temporarily. After several days, a clot hit her heart...she was only 63.

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So sad...what a shock for you and your family.

my mom was 66. ( I was 26.)

My mom kept throwing DVT’s. ( my sisters were born via pre eclampsia. Three and a half months early- identical twins. My mom went into horrific seizures and almost died. They are 18 years younger than me- that’s when it all began for my mom- only they never knew it was APS...)

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I'm so sorry...that is very young to lose your mom. We never really get over it--it's a loss unlike any other. I was older...late 30's and pregnant with my youngest child at the time, who was born 10 days later. I was getting sympathy cards and baby cards at the same time. I felt numb for a very long time.

We are so fortunate to know what we are dealing with...wish our moms had the same chance all those years ago...

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Don't shoot the messenger ;) I'm just relaying what Dr. Schofield's office told me. But, it's good to see there are more "specialists" in the US and good to list them here. Clearly there is much more demand for this specialty than can be addressed.

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Another U.S. specialist is a rheumatologist in Seattle - Dr. Philip Mease. His specialty is diagnosis though, he won't oversee anti-coagulation or warfarin prescription but he will make recommendations to your GP on how to manage it. He provided my diagnosis and when I went to the Best Doctors program for a second opinion, he was one of the two people who THEY use to review patient records. (the other is in Europe) He's an awesome doc.

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I'm so sorry you can't see Dr S, but I’ve no doubt that you will be in good hands with the person she recommended … her office would not refer you to someone of low caliber. She has too much integrity to do that. Good luck to you and I hope you're able to get an appointment quickly!

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