APS UPDATE! New Rheumotologist in NYC at Hospital For Special Surgery

Hi hope all well with all my APS FRIENDS! Thank you for your unwavering support! This Dr. DORUK EKRAM, I got from this forum and he had a conference the day I went with The Charity! He says Y'ALL HELP HIM TREMENDOUSLY! I was extremely impressed with the treatment I recurve D!!! He said I was very complicated with a very complicated medical history! He suggested Plaquinil for me? What is that? A pill or a shot! I'm still on Lovenox, 15 mg coomadin 3X a week and 10 mg 4X a week and Plavix! My INR went up only slightly! It was 1.7 too low again, but told I'm covered in Lovenox! I hope so! Still pain in my good leg! Not as excruciating as it was, but there! Especially at night and morning! My hand ace terrible now too and my fingers swolle at all times! I've been trying to post , but everytime I press submit it din go! I pry you all r well! Dr. ERKAN told me I have homework to do like getting all my medical records! That alone is a job! I must exercise and eat well and change my bad habits that can only hur me! It's easier said than done, but I will try! Yesterday I made an amazing feat for myself and am proud to say, I else a half a mile! I use to walk 3 miles one day and a mile and a half the next day! It helps the stress in my life! It's good for body and soul and missed it terribly! It felt great cuz the only thought in my mind was making that next block, whereas b4 my leg amputation it was that next mile! He said he'd speak to my local Hemotologist and put him in the picture! I hope and pray you all are doing well!!! I miss hearing from you and hope this long msg submits!!!

16 Replies

  • Hurray it did submit!!! Can't wait to hear from you all! I want to know how you r doing too!!! GODSPEED

  • That's great you've found someone to finally take care of you :) Hopefully it will only get better from now on for you>

  • congratulations ..not sure you followed my comment last year....but I always post and recommend Hospital for SPecial Surgery/APS department to anyone in the NYC area

    Ekram is the "super star" for APS research and treatment

  • Yes it was u Luisa! You told me I was lucky to live in NEw York am I correct! The man is also humble too! I got up wen he came in and shook his hand and said I feel like I'm seeing a movie star from Hollywood! No no he said please sit down! So nice I am so happy! My INR is at 1.7 only! That seems to be the biggest problem! He tuk some strange tests! Took X'rays too! I think My Local Hemotologist is mad at me cuz I keep going to other docs to get my INR checked! I told the office Wat my INR was sanche always calls me to regulate the dosage! This is first time he didn't! I may stay with him to regulate me if he speaks and listens to doc EKRAM? Don't know, but my leg pain still here! Thank you all for ur time and if ever I can help someone I sure will! Godspeed

  • Hi Debb,

    Have you now seen a Doctor who really understands this illness? Hang on to him if that is so.......

    So happy for you if you now will get a proper care and the right drugs,


  • Yes Kerstin I think so! Although he did tell me I was very complicated cuz of my medical history and said that APS also very complicated! So I just hope he don't dismiss me cuz I'm complicated, like most docs do and did in the past! He said we wud work together to get my med records and just can't get the 50 and 60 yr old records! My JRA/Juvenile Rheumatoid Arthritis I think was DX'd at age six! Got tired of all DICS telling me it was group aims! Till my cousin told my mom my knees were crunching and making noise going up the Sundat School steps! Plus my knees swelling and had trouble walking! I begged my cousin not to tell!!! Lol...

  • I'm really pleased Dr Doruk Erkan finds the help of the HSF charity helpful :)

    He really is one of the leading world experts in APS so you're in very safe hands there.

    Doruk is also organising the 15th International Congress on Antiphospholipid Antibodies in Istambul this September. There will be a comprehensive patient session too.

    Please read our website to find out more about it: hughes-syndrome.blogspot.co...

    Best wishes,


  • Dr. Erkan has been my doctor fora couple of years now, he has been so very helpful! So caring and knowledgeable.

  • Are you from New York?

  • You must live in New York area! I come from Franklin Square, Long Island! Are you close to Dr. EKRAM! I liked him very much! I call him this Wednesday for test results! Don't know which ones he tuk! Forgot everything!

  • If you have an email address, ask him to email them to you. Also, it might be good to ask him to email his report, so you will have it to bring to your other doctors. They don't have any problem with emailing test results and reports to you at HSS, and then you won't have to remember what he said.

    Glad you liked Dr. Erkan. I hope the plaquenil helps you. It does take time for you to feel better on it, so you have to be patient.

  • Oh thank you! He says I'm complicated and APS IS COMPLICSTRD TOO! So I hope he doesn't do what most of my docs do, is dismiss me! He was confused with all my medical history, but did say we wud work together to help me get better! I've had this my whole life and he asked me my childhood JRA/Juvenile Rheumatoid Arthritis and when I was DX'd! Hard to remember, but I do recall many hospital stays as a child and leaving without any explanation of what had happened to me! This went on till my 1st blood clot in lung at age 24???

  • Hi Debb,

    Kate Hindley speaks of him as an Expert. She knows.

    Hope he will follow you and when you see someone else in the future you can tell them what Dr Erkan has said. Get copies of bloodresults and meeting with doctors and Examinations you are going to do from today. That is very important. I have all my journals and bloodworks since several years back. Ask when you can see him the next time. Tell him you are on this site and that a couple of our members have had an appointment with him.

    Best to you from Kerstin

  • Ok thx Kerstin! I'll do that with keeping records!

  • So are you still seeing him?

  • No I didn't agree with his way of doing things that didn't go with doc Hughes

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