As I've previously posted, I have APS and Factor V Leiden. I was diagnosed about one and a half years ago after a history of DVT several times in my leg. I started warfarin and lovenox Sept 2013, and am now on Warfarin for life. I have been self testing since Nov. 2014
In the past 2 1/2 years I have had the following all in my right leg and foot:
Plantar fasciitis, torn plantar fascia tendon in foot, torn perineal tendon in my ankle, stress reaction fracture in my tibia, 3 DVT at the same time in gastrocnemius veins in leg, (15 years ago DVT in popliteal vein in leg) and now I was just diagnosed with a stress fracture in my 3rd metatarsil. These all have happened without any known cause. I broke my 5th metatarsil prior to this twice, but each time there was a cause--a fall. I've had 7 foot x-rays, 5 MRI's of foot, ankle, and leg, 7 ultra sounds of leg, 8 cortisone shots, Physical therapy, Tens unit treatments, etc. And no doctor seems to make a connection with any of this and why it all has been happening in my right leg and foot.
It is very frustrating, because I am in constant pain and have a problem walking most of the time. I am now in a boot until the fracture heals, and the orthopedist said this may not help but he is afraid to restrict movement of my foot and ankle with a more rigid appliance for fear of getting blood clots. I also had to stop driving until the fracture heals.
Does anyone know of a connection with APS, and Factor V Leiden and weakness in bones and tendons of the leg? Or a connection with warfarin and these problems?
Mozelle
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mozelle
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Hello - I'm sorry to hear of all the troubles you have had over the years. In answer to your question - yes! Absolutely - there is a well documented connection between APS and fractures (particularly in the extremities). Not everyone suffers these but many do, because of the poor circulation - lack of oxygen can weaken the bones. Professor Hughes writes about this in his case study books and I have had a discussion with Professor Khamashta about this also. The problem with Doctors (GPs and hospital consultants) is that they tend to be conditioned to treat single events and often neglect the bigger picture. You could well benefit from having this discussion with an APS specialist. I don't know if there is any treatment available but they certainly will!
I see a hematologist, who is an APS specialist--he monitors INR, although I self test. He sees me every three months, but monitors my INR weekly. I see him the end of this week--I made a list to show him of all that is happening. Maybe he can come up with some answers.
Hi there this does happen in some people, for instance the fractures in the feet are well documented. I presume your consultant has checked your vitamin D levels etc. I hope you get better soon. MaryF
I do have a low vitamin D level and have been taking Vitamin D3--2000mg daily for about 2 to 3 years. Am under the care of an endocrinologist --but the supplements are not bringing up my level. I also have a high calcium, and high PTH which, according to my doctor indicates a tumor in the parathyroid. But she says we have 4 parathyroids and my level indicates that it is a small tumor--So annually, she checks the levels--could this be reason I am fracturing easily? And strange, it is all in the right leg.
You are the first one with APS talking of too high Calcium and higher PTH.
I was operated when the doctors knew of my APS for Hyperparathyroid in 2006. They removed one gland. That time I was not yet on warfarin (baby-Aspirin) and I was worse after the operation as i do not think they took precautions as to my APS.
About K-vit and warfarin: I eat a lot of K-vit rich vegetables and follow my INR here. Have they told you not to eat vegetables rich of K-vit?
My endocrinologist said no surgery at this time, based on the numbers it is a very small tumor. As for the vitamin K veggies--I kind of limit on a day to day basis--I do have a salad most days, but not with the very dark greens--I did cut out spinach and, my favorite, collard greens. When my INR is over 3, I treat myself to some really rich Vit K veggies, like broccoli or spinach. But I think I kind of balance it out most of the time. When my INR was 3.5 last week, the Nurse Practitioner from the doctor's office cut down my pill one night, and unfortunately, my INR was 2.2 this week. (Just from going from 2.5mg to 1.25mg that night). She usually doesn't change the dosage, but just tells me to eat more greens till the next test.
I know we need the K-vit rich vegs and I eat every day broccoli and fresh spinach-blades.
You can ask them to raise your warfarin dose so you can eat more broccoli and spinach blades. What therapeutic level are you on? You have said that you take a test in the finger and that you do not have Lupus Anticoagulant.
I always reduce my INR with K-vit rich vegetables (that goes within 15 hours for me) and make a note of it in the book. If the INR must be higher I raise it mostly with 1/4 of a tablet as i test every second day. Making notes are very important to know what to do and you also soon learn from it how to handle your warfarin-levels.
As you have too much calcium becauses of your Hyperpara (or if it only shows too much because of the PTH/Hyperpara ) I do not know if you need a lot of K-vitamin at present. Better ask your Endocronologist about that!
Sometimes it gets so confusing. I have been on 2.5mg of Warfarin since about November. Most of the time the level is good. My hematologist wants me between 2.5 and 3.1. But I see so many specialists for so many things. My endocrinologist monitors my Calcium, ionized calcium, PTH, TSH (I also have nodules in my thyroid and once a year get an Ultra Sound of Thyroid, and had 2 Fine needle aspirations for biopsy). I kind of keep a good balance usually, with the Vit K veggies and my INR. I am not allowed to change the dosage of Warfarin--the dr. does that, but I can play around with the veggies to keep the level even.
I have had a minor fracture in one of the foot bones, and a broken ankle after a fall which would have broken anybody's ankle. Vitamin k helps strengthen bones, and those of us treated with warfarin do not have as much K in our systems. I was told that if fractures become an issue my docs would try a different anticoagulant. But I haven't had any problems in the past 4 years. I hike and walk. A lot.
Right leg.....??? Rings alarm bells with me...all my probs on right side. 3 DVT right leg and currently very sore heal and back of foot (just ignoting it) but chewing painkillers atm
have a weakness / balance & falling issues to my right side currently have to be aided walking by holding somebody to my right side. ..no answer for you but a coincidence of symptoms. ...
Wow!! amazing coincidence. Since I've had all these problems, ortho prescribed orthotics which I wear in my sneakers. I haven't put on a pair of normal shoes in almost 3 years. Perhaps they can prescribe orthotics for you. Now I am in a boot on foot due to the fracture, but when that's healed, sneakers and orthotics again.
I too have APS- Factor V Leiden. My right foot (just happens to be) has also been providing issues….. plantar fasciitis, tendon issues.. ankle pain. I too am in constant pain and have a problem walking most of the time. Now and then I use my boot, but as of today will try and leave that on for about a week.
I've had a swollen ankle for almost two years now with immense pain. I had surgery last November due to plantar fasciitis, tarsal tunnel syndrome. Went through all the conservative treatments to resist surgery. The surgery did help with some of the pain, but different type of pain now. Probably had all this pain before and the other pain associated with previous issues was stronger.
Hema requested ultrasound as I wanted to rule out any circulation issues and blood clot possibilities.
How much pain and misery does the foot issue cause?
I currently have a 75- fentanyl patch on (for other chronic pain issues) take Norco pills for break-through pain and it is still very painful! Actually took one of my oxycodone left over from the November surgery the other night and this didn't come even close to covering the pain.
Just got a cortisone shot about 10 days ago and the swelling is still the same as well as no improvement in less pain. The numbing agent worked great; wish I could trade that daily for the narcotics!
Thanks so much--I see my hematologist tomorrow--I printed it and will discuss it with him. My internist who I saw today said repeated cortisone shots in foot can weaken bones--could be the problem? He also told me that when I see my vascular doctor(he is the chief vascular surgeon in NY University Hospital in New York) in two weeks, to discuss with him about getting a second opinion with an orthopedist in the hospital where he has his practice. He is the doctor that diagnosed the 3 DVT in my right leg in Sept 2013, treated me with lovenox and Coumadin, and then sent me to a hematologist where I was diagnosed with the APS and Factor V.
I saw my hematologist today for my 3 month checkup--He does extensive blood work every 3 months, examines me, (he treats me for the APS, etc)I discussed with him all that is happening in my right leg-the torn tendons, spontaneous fractures, DVT, etc and today he saw the start of cellulitis on my right thigh--from s tiny scratch 2 days ago--prescribed Keflex for 10 days--he gave me the name of a rheumatologist he wants me to see to try to put this all together--why all the problems in my right leg--my bone density is good and don't have osteoporosis. Also, interesting, they did my INR with a venipuncture and it was 2.3. He told me that when I go home, he wants me to test on my machine and call him--I did and it was 2.6. I called and spoke to his nurse and I'm waiting for him to call me to discuss this.
My story is different to yours, but it may be helpful if I share. I had a serious accident almost two years ago where I sustained multiple fractures of my left tibia and fibula, as well as damaging my Achilles Tendon and the tendon between my tib and fib detached. 5 weeks after the accident I had a Saddle PE. At the time the clot was regarded as provoked by my accident (traumatic injury, period of immobilisation, two operations, on discharge from hospital I flew home etc). After the PE I was put on Heparin, Clexane and then Warfarin. I was anti coagulated for 6 months. As a direct consequence of the Warfarin it took 21 weeks for my tib to heal, so my recovery was extremely long as a side effect of the Warfarin.
I wish you well in working through the troubles you are currently facing.
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Can you help with a research trial based in London?
Eureka! Found the genes! Heterozygous on FVL + Heterozygous on FV HR2 = pseudohomozygous
Has anyone in the group with APS had DVT whilst on warfarin? What treatment and advice was given?
Specialists in mountain west of the USA?
