Hi everyone. I'm 64 and just diagnosed with APS. I am seeing a specialist in hematology who suspects I've had active APS for many years but misdiagnosed until 2 PEs 30 days apart starting on July 4th this year with second one August 3rd. Both lungs have clots but my right lung is the worse with all 3 lobes filled with small clots where as left lung only has clots in lower lobe.
I take Coumadin everyday and have a INR target range of 3.5 to 4.5. My husband and I like to take long rode trips by car. My hematologist gave me syringes filled with 100 of lavonox to take on days we will travel more than 3 hours at a time. These injections really burn for a couple of minutes afterwards but nothing I can't stand.
My hematologist made the diagnosis of APS because I have multiple autoimmune diseases, I miscarried my first child and gave birth prematurely to my 2 children due to eclampsia. I have Hoshimotos thyroiditis and rheumatoid arthritis.
I have ankolosing spondilitis and had terrible pain radiating into my legs. I had weakness in my legs and was using a walker for the last 3 years. My mind was confused and I though I was realy losing it. Everything symptom I had they blamed on my back!
Then I had my 1st PE. After being treated for 3 days with heparin and Coumadin the pain in my legs went away. The weakness also started to improve and my mind became clear and sharp again!
I was having TIAs and the muscles in my legs were suffering from vascular congestion which was the real cause of my leg pain. So I'm feeling like I did 10 years ago! No more walker for me and I'm back to remembering everything.
My hematologist has his PhD and did extensive research on autoimmune clotting disorders before he became a Doctor of Medicine. I feel he is the best in hematology and hiss office is in Panama City, FL.
I feel he has educated me and my husband very well in the treatment of this autoimune clotting disorder.
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NorrieW
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You, my dear woman, have hit the jack pot on finding a fantastic doctor in the United States!!!!
Please share his name so sw can post it for others to flock to.
This is extremely encouraging. Many doctors here don't understand the importance of the higher INR we need, and will only go as high as 3.0 max, but really are ok with it between 2.5-2.8 ( 3.0 being absolute max period end of story. )
Our experts Brits are getting ready for bed, but I encourage you to look st the London Lupus Centre website. ( where Professor grahm Hughes is / and founder of the London Lupus Centre.- and Lent the name to our disease, Hughes s syndrome. ) It's redundant for you, but it will be interesting none the less.
I would just remind you to make sure your vitamin D is high enough, it's important in not clotting- vitamin b's, and ferritin. Of course you already know about the thyroid being lazy ...
All classically paired with APS.
The admin are very good at advising on all of these tests.
I'm sorry it took so long for a diagnosis. All too common. My story as well.
My doctor's name is Dr. Frank Lu, PhD,MD hematology. He is located in the panhandle of Florida in Panama City, FL, USA. He has studied APS Hughes clotting disorder for years both in Europe and the US. He stresses the need for me to have a higher INR and told me not to listen to other doctors who will not understand my clotting disease. I've already had my internist and a pulmonologist try to lower me to 2-3. He has not done any of the tests for APS as I have been on Coumadin and he test results would not be accurate. I trust him. He gives each patient his personal phone number and stresses to call him at anytime. Never had a Doctor do that before and I have called him after the pulmonologist scared me half to death about having a high INR of 3.5 to 4.5. Dr. Lu reassured me that he was a PhD in hematology and is very involved in research regarding APS or Hughes clotting disorders .
That's very interesting! He's right in regards to the very big picture in two very important regards, and I'm going to lay those out for you:
1. The specific anti body to the Lupus Anticoagulant. It's tested on a different metric ( DRVV ) so can't be tested once you have begun Coumadin.
2. ( listen up- this one is HUGE and controversial, but only if your physician is not well versed in Hughes line training , more European method , or has very little clinical experience) . I'm talking about SERO NEGATIVE APS. It's often referred to as SN-APS, or, SNAPS. This is probably the thinking behind Dr Lu not running the APS panel on you. Usually Dr Hughes will run the panel ( I travel to London / am seen by him in clinic there) just to see where anti body titers stand. Many here on forum go in and out of positive/ negative. I myself do.
The danger in the states is that if you go negative, some ill advised of " American standard " physician can " un- diagnose you. This is likely you doctors fear.
If anticoagulation is ever suddenly with held, you will be at risk of developing the dreaded CAPS, so be advised here and now.
It might be a good idea to just run test panel for those titers just to see how high they might be- to give you an idea of where you stand. I don't know. I find it doesn't matter with me, but others do.
Thanks for sharing , by the way. So extremely helpful. I knew for sure he must have been European trained.
Your haematologist sounds and amazing knowledgeful man.You are very lucky to have found someone who understands APS so well. You seem such a strong determined lady who enjoys life and I wish you great enjoyment on your road trips
Hi and welcome, congratulations on your excellent doctor, who clearly understands that patients like you need a higher INR. Great to hear about your symptoms clearing up in some directions. A lot of us also have a Thyroid problem, in fact Professor Hughes' himself often writes about the trio of diseases - Hughes Syndrome/APS, Sjogrens and a Thyroid problem. It is advisable to regularly check your vitamin D, B12 and Iron, plus your Thyroid function when you have your routine check ups. I hope life continues to improve for you. MaryF
Hi Norrie and most WELCOME to our friendly forum for HS/APS!
I feel so happy when I read what has happended to you. Not of course that you have got our illness but the way you have got it.
You have found an excellent Specialist who understands that you have too sticky and thick blood. An INR of 3.5 - 4.5 at once. Most Doctors begin with 2.5 - 3.0 which is not enough at all.
I also agree that the Warfarin has been my lifesaver! I feel best at an INR at 4.0 or even a bit more but at that level we must be careful (I am 73 and you are 64 I think I remember) not to go too high over 4.0. I selftest here in Stockholm and every second day to be able to follow the INR as I am triple-positive with high titres since 2002.
Thank you for accepting me. I am retired now but have been a nurse for many years now and was heavily involved in cardiac research. I've lectured all over the US until my pain made it impossible to stand up. I had been using a walker and having frequent TIAs until I had my 1st PE. After being on heparin and Coumadin for 3 days I noticed the pain in my legs was gone and I could walk unassisted for the 1st time in 6 years. There were so Manny little clots in my legs that my legs swelled to twice their normal size. I was told my legs were just fat and my weight gain was do to my diet! I had been on a 900 cal diet low sodium for over a year and my weight continued to creep up. Having my second PE saved my life! I met Dr. Lu and was finally treated with blood thinners.
You are an inspiration...glad things are getting better for you. It's amazing when you finally have a regimen that works. I have pulmonary hypertension (PH) caused by micro clots in my lungs that had likewise developed over years and had gone undetected despite repeated cat scans. My pulmonologist has put me on a drug called Adempas (Riociguat by Bayer) that has helped immensely. Don't know if your microclots have caused PH for you or if this would be indicated for your situation but I thought I'd mention it so you can research it with your doctor.
I spoke with my doctors today and called your doctor Lu. We will begin faxing info tomorrow. I will have a consulting appointment soon- 2 weeks to establish a new patient appointment- or sooner if he decides it's necessary. Two weeks is ok I think.
I'll tell him his Norrie the cardiology nurse recommended him, if that's ok with you? Would you rather I did not? Your choice.
This is awesome Kelly so excited for you Please start a new post with how the experience goes. Good luck, Thanks Norrie, see you've already helped someone! Networking at its finest!
Norrie - your lungs story sounds so similar to mine in 2009 . tomorrow is my anniversary. Great you found some great Dr's . It can be a hard thing to do sometimes, and then they leave sometimes for one reason or another. and the search is on again. hopes that yours stay for ever !! welcome to our group .. Casey and I up here in little Penacook N.H.
Yes I'm doing well. My dose is at 6mg Coumadin daily with an occasional adjustment to 7mg to keep me in target range of 3 to 4 on my INR. I also take the levonox injections but only if I am on a long drive or if I have to fly. I eat a normal diet now with greens and it actually helped me keep within my target range! I am up and around everyday unless I go into a Hoshimotos flare up. Hoshimotos is also an autoimmune disease. I will be coming off Coumadin in March for 2 weeks for blood testing for other autoimmune disorders. So for I have tested positive for Hoshimotos, fibromyalgia, rheumatoid arthritis with a clinical diagnosis of APS/Hughes clotting disorder. They also feel I have developed Sjornes as my mouth and esphogus and eyes are dry and painful. I don't dwell on the diseases, I just follow protocols for each and I see an excellent pain management neurologist who has me on Percocet and a Bite and Butrans patch that I change weekly. My primary doctor order a trial of Cymbalta and it has helped to relieve my pain.
We all need to look up and go forward as much as possible. Take medications as ordered even though I take so many pills I must rattle when I walk!
The clots that were in both lungs have dissolved but I still have the large one in my pulmonary artery but it has shown signs of shrinking as my right heart pressures were coming down as documented in my last echocardiogram. No worries about throwing another clot, if one comes it just comes and we will deal with it.
Pleased for you Norrie, to be finally managing with all this.
The multiple conditions are a bind. Can I ask which one you had first, although I know it’d probably just be a guess?
Like you you I have hashimotos and a few others. I had a raised APS years ago, during IVF, so need to look into that too. Might be connected to my years of migraines I’m thinking?
Also, I’ve found it a great help, symptoms wise, to swap to T3 alone (liothyronine) and to try keeping to a gluten free, dairy free and very low sugar diet.
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