major dvt with inr of 3.8

[roymelt]

had another dvt in leg with a inr of 3.8 also all my blood tests in range they dont understand why this has happened so now on warfarin and 20000ml of fragmin anyone any ideas

[kathyD64]

Hi sorry to hear this - i have not had a DVT but did have a TIA when my inr was also in range at 3.2 but had been 2.2 the week before - interestingly with me it seems once my inr comes back into range from being below i get the symptoms then which then baffles the doctors its happened on several occasions now i often have wandered if anyone else finds that happens as well - glad you are on extra cover i was put on aspirin with the warfarin glad to say off aspirin now it just didnt agree with my stomach even tho it was Enteric coated. My inr range is now to be 3.5 - 4 but i feel much better when it is above 4 which is concerning

take care hope you are better soon i guess it must be very painful kathy xxx

[ratbert]

"don't understand" is sadly the truth.

Have you been therapeutic on warfarin consistently over recent weeks, or even months? In my experience a dvt can develop in a short period of low inr and take weeks if not months to clear.

For me it seems any period of low inr is a dvt risk, so compression socks, getting up and about frequently, hydration and all that are now part of the routine.

[ebulfin]

I am saddened to hear you are still having clotting events when your INR is 3.8, but I am more saddened that there are still doctors who cannot seem to think for themselves. If something is not written in their medical book or has not been the subject of a lengthy study, they cannot "understand" it.

We have a clotting disorder that (even with our auto-antibody count is "normal") makes our blood cells, and the walls of the blood vessels, sticky with dead or dying cells. Anticoagulation is just a method of making those clotting conditions safer but it will not stop clotting. It can't as to stop all clotting we would surely die from all the minor internal bleeds that are part of everyday life, we would die from the slightest knock or would bleed out from a paper cut.

Perhaps your doctor should be looking at a safer INR target customised to your needs and not what he/she feels you need from their limited knowledge of APS and anticoagulation.

My INR target is 4.4 or above with it ranging from 4.0 to 5.0 in the same couple of weeks BUT I still have superficial clotting in my legs and still have a TIA every 3.5 to 7 weeks and at least one stroke in a year. My blood work has remained as what the doctors call normal, negative or low. I find it strange how each laboratory uses the same test result to be any one of those descriptive words.

Our normal antibodies (the antiphospholipid Antibody) has been triggered by some life event into auto-antibodies (auto equals aimed at oneself) which will attack and compromise healthy cells causing them to self destruct (called Apoptosis, a self destruction mechanism genetically imprinted within the cells). The dying cells get sticky and we clot. this can happen when we have one antibody or one thousand yet most doctors treating us seem to ignore them being aimed at healthy cells when the numbers are the same as a healthy person whose antibodies have not been turned into auto-antibodies.

Where are the doctors who understand the disease and why don't they help us more by publishing more patient help in lay terms so we can take them to the doctors who cannot think for themselves or are too lazy to look up information about the disease.

[Hidden in reply to ebulfin]

Why haven't they put you on lovenox? I've been on it, was still having severe symptoms so now on twice a day dosing. 1 mg/kg bid.

[ebulfin in reply to Hidden]

My choice at the time as the studies had shown that heparin held a greater risk of osteoporosis with long term use, and that low molecular weight heparin does have less of a risk, but it is still greater than the risk from Warfarin. Not a lot in it but with APS we have enough problems so I try to reduce causing any more. As I said it was a personal choice with the information available.

[ebulfin in reply to ebulfin]

My wife just reminded me that I was on Heparin while being treated at St. Thomas' Hospital and I had been on it for three months when I actually had a stroke while in the clinic, so we can still clot.

APS memory is great as I had forgotten a major event like a stroke, I love it though as I can watch the same film over and over as I have forgotten that I have ever seen it.

[craftysue]

I was diagnosed with a DVT about eighteen months ago and after spending hours in the emergency ward, and having an episode (my families name for an unexplained for an extreme headache and fainting)-not A & E-the doctor finally told me that it was not possible to have a DVT as I was on Warfarin and suggested that I had sprained a muscle, while walking with a stick! I must admit I did swear at him and called him a few choice words.

So, congratulations on having a doctor who believes you and hope you feel better soon1

[roymelt]

hi they tell me every major vein from ankle to groin is blocked ive been between 3.7 - 4.5 for the last 4 months, when i went hospital on sunday 4 doctors told me i had just bleeding under my skin, told me to go back monday for ultrasound where it was comfirmed so looks like i could change to fragmin which is what i want , just hope i dont get another pe

[bevers1]

I also keep my inr between 4.5 - 5. Now wear grade 2 compression stocking all the time as veneous insufficiancy. Have micro clots and dvt's, also plays havoc with my lungs and heart as well joints, muscles and head.

What fun we APS's have :)))

Take care all. x

[roymelt]

sorry i wear like trouser stockings that are full on one leg and down to knee on other leg i am mobile as own a pub