Finding doctors who know how to help

Hi all.

My APS has become very symptomatic in the past couple of years. Three years ago, my blood disorder played a fairly insignificant role in my life.

I'm not sure what changed, but now I have cronic migraines and arthritis due to my hypermobility. I also have nerve issues. Worst of all, I have terrible stomach issues. Now, every time I eat, my body essentially goes into shock. At first, I thought all of these health problems had no unifying cause, but studying about Hughes Syndrome, I've found that it could be the root to several of my problems.

My question to everyone is whether anyone else knows if this disorder is progressive?

Also, none of my doctors know how to treat me. I'm now up to five specialists for my blood disorder alone and only a few of them have even heard of Hughes Syndrome, let alone how to treat it. Can anyone recommend any information that is specifically designed to educate my doctors?

17 Replies

oldestnewest
  • When were you diagnosed with Hughes? You don't say what you are taking as an anticoagulant are you on Warfarin or something else? Generally, if the anticoagulation is at the right level the disease won't progress as such but all the oddball symptoms can crop up. If you look at the right hand side of the page you will see a list of APS specialists. If your doctor hasn't heard of this then you are wasting your time and money and not getting the right treatment.

  • Hey Ozchick. we must have been replying at the same time. All those northern hemisphere people must be in bed! lol

  • Hi

    Sorry, I have no wisdom to pass on to you. All I can do is offer empathy as I also suffer from most of those symptoms. I fell ill on the 18-12-15 with PE's and have steadily got worse all year. So I don't know if the APS has "progressed" or its just taken a while for all the symptoms to settle in.

    Sorry you feel so awful. :(

  • Hi there Hughes Syndrome/APS can be an unstable condition, welcome by the way, please let us now where you are located this will enable us as Administrators to help you more efficiently and of course other members. MaryF

  • I live in Mesa, Arizona. Mesa is one of the suburbs of Phoenix, which is the capital. Actually, there are a lot of little cities around Phoenix that have sort of melted together. They've created a giant city.

    If you know of any doctors in Phoenix that specialize in Hughes Syndrome, please let me know.

  • Right your best bet will be localized knowledge on here from other members in the USA, but I also enclose this: apsaction.com/ You could contact some of he Dr's this. Also make sure any doctor looking after you has a link to the charity by email.... lots of information on it, please have a look at it all: hughes-syndrome.org/

    For instance: hughes-syndrome.org/about-h...

    Use the forum as much as you want, as lots of people will have helpful ideas for you. MaryF

  • Hi and welcome to this friendly site where we all have APS!

    As the others have said please tell a little more about yourself. I advise you to educate yourself (do not know how long you have had the diagnose) by reading as much as you can and to stay on this site and ask questions. We learn from eachother.

    I always talk about a book (I am from Sweden by the way and has been on this site for several years now) written by Kay Thackray: "Sticky Blood Explained". It is not quite new but she has APS and tells about the different symptoms and how it is to live with this illness.

    There are other books written by Prof Graham Hughes who discovered this illness 30 years ago. (Hughes syndrom e and APS is the same illness).

    My best wishes to you from Kerstin in Stockholm

  • Rereading your question again I see that you have studied a lot about our illness.

    Then you also know that Lupus, Sjogrens and Thyroidea go hand in hand with APS. I do not know if you were diagnosed by bloodsamples or by symptoms. I myself have all the three antibodies for APS and no other autoimmun illnesses and they say I am "primary APS". It is important to have a Specialist of APS and often it is a Rheumatologist who knows what to look for as it can be difficult to make out the differences of these illnesses. Even Fibromyagia and MS can be mixed up with APS.

    That is why it is essential to have a Doctor who KNOWS APS and there are very few doctors who know that we need to be properly and stable anticoagulated to avoid further damage to a lot of organs in our body.

    Kerstin

  • Hello.

    My name is Veronica. I was diagnosed at 26 after my third pulmonary embolism. My doctors also put a greenfield filter in my IVC. I haven't had any PEs since, but I've had a few DVTs.

    When I was first diagnosed, I was put on Warfarin. Unfortunately, my body didn't respond well to it. My doctor wanted me to stay within the 2.5-3.5 range, but for whatever reason, my body could never stabilize. I was prone to really wide swings. My INR would drop down to a .4 and I would get a call to ro see my doctor immediately. He would take action to raise my INR. Unfortunately, even the smallest change would cause my levels to swing up to a 7.2, which meant that I would have to rush to the ER.

    After two years of that, I was put on Arixtra. My body respond well to Arixtra, but it really bothered me to inject myself. There also seemed to be no alternative

    Fortunately, an alternative was found in Xarelto. Xarelto does have its complications. I get really bad iron deficiency anemia, so I've been prescribed Iron infusions every 4-6 months

  • I note that iron deficiency pops up yet again as a symptom that many of us with Hughes are experiencing. I think I will have to go down the infusion route before long as oral methods, both tablet and liquid, appear to have created more problems than they solved.

  • Hi Tim,

    Do you mean that you are going to stop Warfarin or is it drugs for irondeficiency you talk of? Sometimes my English is not enough,

    Kerstin

  • I am on Xarelto to treat my Hughes Syndrome.

    Unfortunately, one of the side effects #

  • There are sideeffects with all drugs but we need to be properly and steady anticoagulated.

    Are you triple-positive or do you have Lupus Anticoagulant? Otherwise have you thought to try to selftest? That is the best way to cope with the ups and down in the INR. I selftest and test every second day at home and also have Fragminshots to take if my INR goes under 3.0.

    Besides a Specialist of APS an anticoagulationsdrugs that works are the two main problems you have to solve.

    Kerstin

  • Sorry so late getting back to you.

    As far as self testing, I would love to self test. Unfortunately, I live in The States, which means that I have to deal with insurance plans. I requested a tester, but my plan said that it wasn't justifiable.

  • The following sites may be useful when looking for an APS specialist:

    The American Society of Hematology

    hematology.org/Patients/FAH...

    Healthgrades

    healthgrades.com/hematology...

    APS Foundation of America

    apsfa.org/apsfadrlist.htm

    APS Action

    apsaction.org/

    Stop the Clot

    stoptheclot.org/learn_more/...

    APS Awareness USA

    apsawareness.com/

    MedicineNet.com

    medicinenet.com/antiphospho...

  • I also have APS and am iron deficient. I have been having Venefer iron infusions weekly from April 2025 to Sept 2015. I was also taking supplement s as well. When I added blackstrap molasses and cooking with cast pans my numbers began to go up. Now I go every 2 weeks for infusions

  • See my post I just posted"how to find.."

You may also like...