Newly diagnosed & seeking guidance

I'm a 37 yr old woman newly diagnosed with hughes syndrome after DVT and postive lupus anticoagulant test. I have had Mixed Connective Tissue Disease (MCTD) with primary symptoms of Relapsing Polychondritis and Lupus for more than 10 years and have had symptoms of hughes for at least a few years which went undiagnosed due to history of migraines, back problems, and MCTD. I will be seeing a hematologist on the 23rd and am looking for advice regarding important questions to ask him and discuss. My general MD is doing my anticoagulation (DVT was mid calf to above groin 10 days ago when found- still cant walk on that leg due to pain). He's set my therapeutic INR range at 2.5-3.5 which I havent hit yet but has otherwise been very vague about treatment and outlook. He saw me for about 15 minutes 3 days after dvt was found at ER. Otherwise I've only seen the nurse - basically I've had to tell him what to do via phone. My rheumatologist made APS diagnosis based in history after ER visit where dvt was found and positive LA test and told me over ohone i'll be on lifelong anticoagulation. What questions should I be asking the hematologist?

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  • Hello and welcome

    Your story of difficulty in getting a diagnosis is a common issue for many of us with Hughes Syndrome/APS.

    Where are you from?

    Many of us have to have an INR range of 3.5 to 4.0 to feel reasonably symptom free, so do keep that in mind and urge your MD to consider this.

    Also have a look at hughes-syndrome.org and print off any useful information to give to them.

    Keep in touch and let us know how you are getting on.

    Best wishes.

    Dave

  • You have got a diagnose of APS. That is a step forward to feel better when you are well anticoagulated. The second most important thing is to have a doctor that understands what you tell him. That must be a doctor specialized on APS.

    Hope your Hematologist understands APS as so very few doctors do. That you will find out when you tell him about your symptoms. If I were in your shoes I would tell him about the symptoms you have. Sometimes they find that so much is due to APS only and perhaps not Lupus or MCTD as you have been diagnosed with earlier. I do not mean to say that it is that way, but as the doctors do not know APS they do not know what symptoms they must look for. I hope you understand what I mean. That I would ask him about.

    Most of us feel better when we are on an INR over 3.0, around 3.5.

    That was what I wanted to say. I wish you good luck on the 23rd!

    Best wishes from Kerstin in Stockholm

  • Hi and welcome, a couple of things newbies do, is to really familiarize themselves with the information carried on the charity website. hughes-syndrome.org/ Also many people also buy the books on there, I did, and then handed them on to the various medical professionals involved locally not only in my care, but that of my children. Make sure you get your Vitamin D, iron and B looked at and also a Thyroid panel... as this can all contribute to making things worse. MaryF

  • Thank youall for your advice and support. I did read much of what was on the website. I will definitely be talking with the doctor about the thigs you mentioned and writing out my symptoms before hand to share with him. Here in Helena, Montana in the U.S. doctors dont have the opportunity to get very familiar with rarer medical conditions due to the low population. I'm really hoping the hematologist knows some about APS.

  • My suggestion? Bring a few bullet lists of: history; symptoms; questions. Go to the APS action web site and see if there where the closest APS approved doctors are located. You might be surprised, or you might find an APS experienced doctor close to a family member or friend.

    If you are placed on warfarin, don't let its reputation as "killer Coumadin" freak you out. Yes it can be a dangerous drug. Most people take warfarin because they have had a valve replacement, or an a fib, or such -- in other words, they have a "sticky spot" in their circulatory system. But we have sticky blood -- in other words, our entire circulatory system is sticky. So comparing our experience with warfarin with that of non -APS warfarin patients is like comparing apples and oranges.

    And though we re not doctors, we are all here for each other. Ask us questions, refer to us for support, and remember that most of us carry on with our lives just fine after diagnosis and medication.

    Stay strong.

  • Well said Gina! I totally agree here in Stockholm without snow.

    Kerstin

  • Thanks for the info GinaD. I'll definitely check out that list of doctors. I am on warfarin currently as I had a clot from mid-calf to above groin 2 weeks ago. Have been told I'll be on anticoagulation for life. Although the clots were definitely a surprise as well as finding out about the APS, having some relief from the daily headaches is a huge blessing just by itself. I am supposed to be having lumbar fusion surgery very soon (surgeon is fighting insurance for pre-authorization) so getting this figured now is really good.

  • Hi there, Id strongly recommend that whoever your back surgeon is that he talks to your APS Doctor before your surgery. You will need to be bridged when you have your surgery and that is very important so the more you know about this condition so that you can make sure they are doing their jobs properly the better. If not Id put off that surgery until you can find the APS specialist to advise BEFORE the surgery.

    Good Luck!

  • Thanks for the suggestions. The surgeon will be having me bridge when the time comes. I think the biggest issue I'm having right now is my GP has been treating me like the clots are a result of simply being immobile due to my back (lower INR so I'm still having a lot of symptoms, only checking my INR once a week even though I've only been on anticoagulation for about two weeks and it's been below the therapeutic level every time). Hoping the hematologist can give him some good direction as I really don't want to have the find a private practice GP (mines part of a clinic for state employees and their families so it doesn't cost anything).

  • I think you will have to educate your GP. It can take a few weeks to get to your target INR so be patient and don't get stressed as that won't help either. Relax and have a good Christmas.

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