APS Specialist in Florida.

[Or81]

Hi there

I am Orlando and I have just been diagnosed with primary APS. I am trying to find an APS specialist in the Miami area (Florida, USA). Can anyone on this site suggest one?

Thank you!

[KellyInTexas Administrator]

Hello Or81!

Welcome to the gang.

I have not had any luck securing names in Florida.

Are you already on warfarin?

Are you needing both hematologist and rheumatologist?

Who diagnosed you?

Do you have a good internist? ( must be internal medicine.)

I would start there- ask your internist who has the best reputation for rheumatology and hematology.

Miami has a huge trauma university teaching hospital. Find out who the top Professor is in internal medicine- they usually teach and hold clinic. ( or they are older and have private practice now and still have ties to hospital. ) Find that doctor! Ask who is the top rheum and heme in Miami.

[Or81 in reply to KellyInTexas]

Hello Kelly!

Thank you for the welcome message. So far I am being seen by a neurologist and a rheumatologist at the Cleveland Clinic Weston, Florida. After extensive testing, and not responding to MS treatment (my first diagnosis) everything is pointing towards primary APS. I have been referred to a hematologist and I am waiting for the appointment. Nevertheless, he has no expertise with this disease. I found on the web a rheumatologist in the Miami area who has APS listed as one of the conditions that he treats:

healthgrades.com/physician/...

I am going to give it a try as well. I am just on baby aspirin now and vitamin E with some minor improvements but definetely improvements. I did not know that I needed an internist as well. I will start my search. am happy to have found this community and that I am getting answers to my symptoms.

Thank you!

Orlando

[KellyInTexas Administrator in reply to Or81]

Or81,I wanted to add one more thing, however I’m not sure how helpful it will be.

I was diagnosed in Late 2016. ( presented with Acute DVT and Twice elevated APS antibodies.)

I needed an actual hematologist who understood APS, and I found out about a hidden gem in Panama City from a lady of this forum. - she told me of a solo practitioner in a tiny clinic on Jenks avenue. Dr Frank Lu.

I booked a flight! He was an absolute genius with APS.

Unfortunately he died about 6 weeks later.

The lady is no longer active on this forum - but I do keep in touch. She has a decent rheumatologist. I think it’s too far north for you anyway.

If you would like- I can get you in touch with my Texas team . If you have BCBS PPO it goes across state lines - and stays in network status.

At least my team now is very familiar with APS.

I can also link you to APS 2019 treatment guidelines as set forth by EULAR - I think it has not changed. ( again- just guidelines. )

EULAR- European League Against Rheumatism. Same for American guidelines.

Would you like me to link it for you?

[Or81 in reply to KellyInTexas]

Hello Kelly. Yes, please. Feel free to link me to both your team and the guidelines. I would consider traveling to other states if I do not get the right treatment down here. I will push for warfarin targeting INR 3.0-4.0. I have some of Prof. Hughes's research papers in which this is the treatment suggested to someone with neurological symptoms from APS. I will share that information with the hematolgist which I am sure is a good one but APS is not his field. Thank you!

[Mermaidatheart in reply to KellyInTexas]

KellyInTexas I would also love to be linked in to your team. I live in upper eastern central Florida and had looked into Dr. Lu, but say your post that he had passed.

I will travel far or near to have better consultation, testing, whatever it takes. Like Or81 I am just seeking knowledgeable pysicians.

[HollyHeski Administrator]

Hi, Kelly is your best bet here but I just wanted to say welcome.I'm sure others will come on too.

[Or81 in reply to HollyHeski]

Thank you!

[KellyInTexas Administrator in reply to HollyHeski]

Thank you Holly- as long as we all decipher my vision issues and Siri’s creative autocorrects I miss! I often re read later and think ... 😬 so sorry to you all. ❤️

[Miajnt]

i see Dr Ammus in Miami. I don’t have APS just some antibodies but he seems to have knowledge of APS.

[Or81 in reply to Miajnt]

Thank you!

[Piscesdreamer]

I see Dr Jeffrey Ritter in Miami. He is a rhuemetologist. I also have seen Dr Wang at the Mayo Clinic in Jacksonville.

[Or81 in reply to Piscesdreamer]

Thank you for sharing!

[KellyInTexas Administrator in reply to Piscesdreamer]

Thank you! What about hematologist?

[Piscesdreamer in reply to KellyInTexas]

I saw Dr Blaustein at Mt Sinai Miami Beach a few times. My primary hematologist is Dr Nyberg in Key West. Twice a year, he runs a full cbc and monitors my vitamin D levels. Dr Ritter is who manages my APS. I am triple positive. He runs a full autoimmune panel at least once a year to check for any other emerging autoimmune diseases and also full cbc with complement. Someone is always looking at my blood work throughout the year.

[Or81 in reply to Piscesdreamer]

Hi piscesdreamer,

I just booked an appointment with Dr. Blaustein. Thank you so much for the hint!

[Piscesdreamer in reply to Or81]

Great! He called me last week when I asked if he recommends that I take the moderna vaccine.

[Piscesdreamer in reply to Or81]

As with all doctors, do your research, prepare your questions, bring your notes. Tell him what you expect to get out of the appointment. I do that and he is patient and answers all of my questions.

[Or81 in reply to Piscesdreamer]

I am a nerd 😁 Coming to the appointment with the most relevant research papers from Dr. Hughes for a deep discussion 😀

[Piscesdreamer in reply to Or81]

Here is something new and interesting

sci-news.com/medicine/6-gin...

[Or81 in reply to Piscesdreamer]

Thank you! No harm to try 🙂

[nurse_ninja]

Hi Orlando. Greeting from the Space Coast, Melbourne Fl. I too have APS as my primary diagnosis. It took 7 doctors to figure me out. I haven't found any specialist in APS. However, I have a great Rheumatologist who has started me on Plaqunil for APS & Cymbalta for Fibromyalgia pain. It was my Hematologist who Dx me after my DVT. Currently, I am only taking a full strength aspirin and Vitamin E. Water is also a blood thinner. I drink 8 - 10 cups of water. My doctors are knowledgeable about the APS, but it is not their speciality. I am hoping with APS being highlighted with COVID that more physicians will be attracted to research & fighting this disease. Good luck. Serena

[Or81 in reply to nurse_ninja]

Hi Serena. Thank you so much for sharing. You are right about water. I did not think about that before. I am going to make sure that I am getting the right amounts. Good luck to you as well!

[Mermaidatheart]

Or81 have you gotten any information for specialist in Florida or any other state near Florida? I too live in Florida, near St Augustine and have been searching for for the very same thing!

[Or81]

Mermaidatheart, this doctor has experience treating APS : doctors.umiamihealth.org/pr... At least he has published research on APS. Thanks to the published work I found him.

But the wait time for an appointment is long. I have to wait until May. In the mean time I am going to see other doctors but no idea if they have experience with APS.

[Or81 in reply to Or81]

I just went to a hematologist with no experience treating APS. Waist of time and money...😪

[Piscesdreamer in reply to Or81]

Oh no! Was that Blaustein?

[Or81 in reply to Piscesdreamer]

Hahaha. You remember! No, it was not Dr. Blaustein. He is coming soon. I visited a doctor at the Cleveland Clinic weston florida. He seems to be a good doctor but he has no experience with APS.

[Piscesdreamer in reply to Or81]

Yes, it is so disaapppibtibg when we see a doctor and we know more about our disease then they do. All the more reason for doing our own research and education. Hralthunlocked is awesome. Also I am a member of 4 APS facebook groups. There is a wealth of personal experience there as well.

[Piscesdreamer]

Hello!I just spoke with a friend who has Lupus. She sees a doctor at the Cleveland Clinic in Weston. She did not like Dr. Ritter in Miami.

my.clevelandclinic.org/staf...

[Or81 in reply to Piscesdreamer]

Hi! I have an appointment with Dr. Blaustein today. Let's see how it goes. What is the name of the doctor at the Cleveland Clinic? Thank you!

[Piscesdreamer in reply to Or81]

OK good luck! I hope he is right for you!

[Or81 in reply to Piscesdreamer]

Didnt you have a good experience with him?

[Piscesdreamer in reply to Or81]

I had a great experience with Dr Balstein BUT I also have had bad experiences with other doctors that people have had great experiences with. I think it depends on how many conditions an individual has. I had one appointment with a specialist and he must have been having a really bad day, he gave me minimal time to discuss my history with him. My friend who recommended him had the opposite experience.

[Or81 in reply to Piscesdreamer]

Nice to hear that you had a great experience. I am going to him because of your recommendation I will tell him that Piscesdreamer recommended him 😂 Seriously, I have a good feeling about this appointment. They requested my medical records because the doctor wanted to read everything ahead of time. They had to send the request several times and called me to put some pressure on the process.

[Piscesdreamer in reply to Or81]

He will know me as Irene. He called me a few weeks ago to let me know I should get the vaccine.

[Piscesdreamer]

Dr Donohue

my.clevelandclinic.org/staf...

[Or81 in reply to Piscesdreamer]

Thank you! I am trying to find a hematologist. Since I have primary APS a hematologist is the only one that could put me on blood thinners.

[Piscesdreamer in reply to Or81]

Many of us have been put on thinners by rhuemetologists. Depending on their area of expertise, some rhuemetologist are better versed in APS than hematologists, and visiaversa.

[Or81 in reply to Piscesdreamer]

I was told that when you have secondary APS then the rheumatologist is the best specialist, but if it is just primary APS then the hematologist is the right call. I think that when it comes to this disease nobody knows for certain.

[Piscesdreamer in reply to Or81]

For me I find it best to be monitored by both. Perhaps start a new thread asking others with primary APS if they have one or the other or both.

[Piscesdreamer in reply to Or81]

healthgrades.com/physician/...

[Or81 in reply to Piscesdreamer]

I am so happy that I followed you advice! Dr. Blaustein listenned and took action! He agreed with all the arguments that I presented to him. I have antiphospholipid antibodies (moderate high) but I have not had vein trombosis. I have a non-criteria manifestation of the disease. He carefully reviewed all my medical records (extensive testing) and the research papers from Dr. Hughes that I showed to him. I was really surprised to see that someone with more than 50 years of experience as a hematologist would be so open to discussion and to new ideas. He agreed that a trial of warfarin is the best thing to do at this moment and I am about to start with a close monitoring of my INR levels. Thank you so much Irene! Orlando

[Piscesdreamer in reply to Or81]

I am so happy for you and at the same time relieved! (I get anxiety when I recommend doctors lol). Make sure you get an autoimmune panel once a year to look for any indications of any emerging autoimmune diseases.

[Piscesdreamer]

While at Mt Sinai, you might want to inquire about their vaccine process. Florida now allows hospitals to vaccine under 65 with health issues.

[Or81 in reply to Piscesdreamer]

I will do. Thank you. 😃