I was just wondering if I bruise weirdly or just like others with APS. If I knock myself somewhere sometimes I bruise right then and other times it takes days for the bruise to fully expand before starting to heal and there is almost always a hematoma in the middle. I can knock my leg on Monday & is takes days for it to grow to it’s full size, getting larger by the day and then it will slowly start to heal. Sometimes the hematoma can stay for a couple months afterward. Is this normal for those of us with APS? Or am I just being weird again!
Thank u for reading I would like to hear how the bruising process goes for u!
Hope today is a good one!
Soul Rebel
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SoulRebel-APS
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I have an 8 seat table that is one of the tall sets. It looked great in the store. But we found it, after purchasing and getting it home, that it is Evil. The table of course has for corners and each chair has 2 corners on top and we are forever hitting corners with arms, out sides or legs. It’s really pretty. I just didn’t know it was evil table laying in wait just to knock u a good one! Lol
U take aspirin sometimes? I take plavix 75mg daily plus I have been taken 12.5. To 15 mgs warfarin every day. I am not allowed to even take I bupropion much less aspirin! So I’m stuck with the least effective Acetaminophen, which is practically useless. Lol the speed at which I bruise and the size of the bruise does indicate certain INR levels but they still grow for days gettn bigger everyday. I’m ab odd person and find bruises fascinating, as they change thru so many beautiful colors but can do without the big hemo in the middle!
Hope today is a good one for y Kelly, thanks for ur replay.
So let’s make some important points - mainly for the benefit of others reading:
1. Each case of APS is highly individual and is case by case provided the patient has a competent and well qualified doctor in APS.
2. It does not always matter how much warfarin a patient takes, what matters is that the INR correct INR is achieved and kept in range.
( ...although my Rheumatoligist at the London Lupus Centre did tell me the that fact that I needed quite a lot should have clued in my local Hematologist that my blood was extra hyper coaguable.)
I Require about 18.5 mg every night, but I do have one copy of the Vkorc1 - polymorphism genetic mutation so I am an incomplete metabolizer of warfarin. I need a little extra.
3. Regarding anti platelet therapy:
This is not a decision that was made lightly by my team in Texas. ( neurology and Hematologist made decision together.) I have been prescribed both clopidogrel and aspirin at different times depending on which anticoagulation I wave been on.
Basically when on warfarin, if INR was at 4.0, I added about 20 mg jr. ( baby) aspirin. My Hematologist said I should just play with it very cautiously until I found my balance- But my INR was so labile it could jump too high. I never felt comfortable. I kept clotting- and my INR kept getting raised so I quit adding aspirin.
The new strategy I have with my Hematologist is to add a tiny bit of lovenox only of I dip in INR. It’s working better for me, with less risk because it’s out of system faster. ( I know it’s not an anti platelet) but this is what we are doing.
I know it’s not the amount I take but the effect I get from it. But I am sorry u have to take extra because u do not properly metabolize it. How did u come to learn about that? Was it thru ur Vkiorc1-polymorphism. I to have a couple genetic mutations that make me clot to much. We just all the fun don’t we!
I found out about it on this forum. I asked the question, “ Do others here find they need an ever increasing amount of warfarin to maintain their INR?”
Or maybe even another one a little later that read something similar, or even about needing to raise the INR a little .
@MaryF brought this polymorphism to my attention and included a link.
I have since posted myself about this and includes a link.
Hi, I am struggling to type and indeed read currently, so I am just going to agree with the expertise you have had on this reply. A lot on here bruise, either from their medication, or their particular individual profile , or indeed at times another diagnosis alongside Hughes Syndrome/APS or a mixture of all of this. do seek medical advise, if something changes. MaryF
My experience of bruising on warfarin is that it is very random, but often much more than in life-before-warfarin.
A slip down the last three stairs (didn't hit head, did hit backside) I thought would leave an egg-sized lump/bruise (if not on warfarin) instead left my entire leg black/blue/yellow with multiple lumps a lot bigger than an egg. But the first day was only yellow bruising, flat, over maybe 6in square area - the rest appeared over the next couple of weeks, and seemed to track over time down the leg behind the knee and down to the calf, areas which suffered no impact. Over a month to heal.
Sometimes I get bruising, usually just yellow, particularly on legs, for no reason at all (that I can recall).
And then this summer on holiday I was mountain biking (because someone had to look after the kids on hired bikes and I didn't un-volunteer fast enough), and, I fell off, of course. On a rocky bit, of course. Blood all down leg, plenty of pain, oh **** that's going to bruise really bad, I thought. Back at the hotel I took some remedial action, since alternate hot/cold is supposed to be good I loosened it up in the pool (I did clean up the blood first ), then cooked it in the sauna and rubbed lots of ice on it in the cold room, rinse in the pool and repeat for a good hour or so. I did bruise, but only some small yellow ones like I normally get for no reason.
Given the impact, I think that was a result, but so far I haven't managed to persuade them to give me a prescription for an Alpine sauna/ice-room/pool in the garden - going to keep trying though...
That sounds familiar I would probably have close to the same reaction in that type of fall, however, I don’t get any yellow bruises. There is a part towards the very end of a bruise healing that they turn yellow not my favorite time. They aren’t very nice looking at that point.
Holly, it’s nice to know that I’m not the only one that can see the bright side of a bruise by seeing the color formations and changes. Especially when they don’t heal for a month or two, I at least can watch them go through the stages. The majority of my bruises are ones that I have no ideas why they are there! But is life on blood thinners I guess.
I bruised like exactly like you describe when I was on warfarin. It looked terrible and lasted so long. Often I couldn’t remember bumping anything and would have a huge bruise. Getting blood draws every other week for my crazy unstable INR left me with an almost continuous blue hand, since I needed hand draws due to impossible arm veins.
I’m so sorry to hear that. It sounds like u have changed medications which I hope means u don’t have to have ur blood checked constantly. Thank u for your reply. I to am unstable some drs will argue with me saying I have to be eating wrong or taking my meds wrong but I am not so either I’m just, like u, one if the people whose blood refuses to behave! 🙂
It was a real blessing for me to change meds and fortunately it's worked out well for me. When on warfarin my INR was consistently unstable :-). I was literally obsessive about my diet, aiming for 120 mcg of vitamin K foods per day from varying sources of food. I also took 100 mcg of vitamin K by pill form, my doctor thought that might help to stabilize me, but it didn't. I just needed frequent tests and adjustments. Self testing wasn't possible for me because it was very erratic also.
I had horrible migraines during this time, I had at least a dozen triggers. Sometimes an abortive med would help, but I couldn't take it every time I had a migraine, since I usually had a migraine. My neurologist (at that time, whom I have since left) had a one-size-fits-all approach so she was little help. I had to retire 3 years early due to the headaches.
When I finally was able to see an APS specialist, she thought a switch to apixiban might help. I am fortunate that my clotting events happened long before I was diagnosed, and I've only had micro clotting since (and none since being on apixiban). Within weeks of the change I experienced such relief from the migraines that I was getting my life back. Being able to eat healthy again and not have bruises all the time, and not having blood draws were wonderful bonuses.
I know it's not for everyone, this is just my story.
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), then cooked it in the sauna and rubbed lots of ice on it in the cold room, rinse in the pool and repeat for a good hour or so. I did bruise, but only some small yellow ones like I normally get for no reason. 
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I wanna know about your APS/hughessyndrome. how you found out you had it, and what your symptomes are.
APS, Factor 5 and Protein C Def. - Fatigue, vertigo, headaches, rashes and bruising
