I have an on going problem with an arm Humerus, and shoulder. Long story, been on apixaban over a year, with no problems, better than warfarin for me.
Now however having mega nose bleeds, 3 + times a day.
Now my elbow is too painful to even touch, it looks blue, and I am vomiting mucus blood clots, probably from my nose bleeds?
I’m very sorry to hear this-
This is something you must have urgently seen to be a doctor. Ring for an ambulance if you need to.
Make sure your ferritin levels are checked before leaving hospital. you may need a fereheme infusion if you are low.
Anticoagulation levels can be tricky to get right in some APS patients. Every now and then even with Apixiban it can go wrong.
I can’t believe looking back that it has been 7 months, my shoulder and arm has been plated and screwed secure by surgery, that went well. But the nose bleeds are hell still. Had to call an ambulance 2 nights ago. Paramedics were brilliant, but very shocked at the blood bath loss. In A&E they packed my nose, then corterized it. Said I was border line for a blood transfusion, took bloods to find match. Did more bloods. I walked out of there, well, I say walked my husband literally held me up, carried me home. Told to go back in 48 hrs. With blood test forms, for everything and given a bottle of iron supplement.Then the appointment I got is now for Monday as non sooner available. The only thing the cortorizing has done is cut my blood bleeds down from 4-7 hours too 1-2 hours. Pinching nose and using ice. I am out of breath, my heart is absolutely pounding, my fingers and toes go numb. I am sweating but cold. Today I have had around 7 of the reduced nosebleeds. I feel my husband is fed up with me, especially disturbing his sleep and not feeding him too well. Although he did bring me a chair into the kitchen tonight to cook at the gas hob his meal. He also drove me to the local shop to get butter, milk and essential items. But he sat in the van, I almost collapsed in the shop, they had to get me a chair, the staff were helpful. He brought me home. I’ve had nosebleeds and a pounding head and chest since. When the bleeds stop, in between I crash out asleep for a couple of hours, then in all starts again. I am trying to get my bloods done again tomorrow. BUT ONE OF THE MOST ANNOYING THINGS IS even in A&E, none of the doctors knew what APS was. Not even the ambulance crew, but I can understand the paramedics not knowing. But after 10 hours in A&E, not one member of medical staff still did not know what APS was.
I got the feeling that the medical staff thought I was making it up. Yeah really I felt like saying on the 9th inflatable packing painfully inflated up my nostril? Then the acid probe burning it shut. Why do they not know. Or understand what it is? I even tried saying Sticky blood, Hughes syndrome the lot..... they looked at me blankly. Let’s hope and pray I get my blood test tomorrow, or basically in a few hours time. As yet again no appointments.
Oh, the one thing one of the doctors asked in A&E was my blood count was normally seen in someone who was or had a heart attack? I have never had one. The rest I can’t really remember what they we’re saying, as I was in and out of it, lying dissy across 2 plastic chairs.
This is terrible! Start writing all your questions down as this should not be happening, no good giving you iron tablets when you've lost that much blood, you need infusion. They should have kept you in until your stable?
Have you an APS specialist that you can contact for help? (Immediate if I were you).
Get your husband, who obviously cares but doesn't know what to do, to let loose his frustrations with the doctors.
It may be time to try another anticogeration than apixiban?
They usually check your troponin level for chest pain etc to see if you are having or have had heart attack, this needs to be repeated after 24 hours?
Hi if you are having a severe nose bleed you need to go to A&E
Otherwise definitely see your Doctor tomorrow or call 111 if you are in the uk
Hi, there is a higher risk of bruising and bleeding on Apixiban than warfarin or heparin, reading your previous posts, warfarin is a no no for you. You mentioned before that one minute your blood is thick and clotting, the next bleeding, this sounds like your not in control of your APS, despite taking on time and regular and you really need medical intervention, with your pain meds and pancreas problems too, it's such a fine balance.
Please take your nose bleeds seriously, especially as you are having so many, when you go to A & E, 111 or your GP, take a log of all the times its happening.
You need to have your bloods checked for clotting, B12 and ferritin levels, as these could be out of range with all those bleeds?
Would your GP give you a trial on heparin, at least until you get to see your specialist?
Any news on a date for your surgery? I'm worried for you that they won't operate until you get the bleeding controlled and would hate for them to use this as another excuse!
Take care x
I’ve just posted a update, I’m in hospital now , my blood went down to 50. I have just had blood infusion. I felt like I was going to die, honestly.
I am feeling much better now, but still weak, and headache. Hopefully going home tomorrow. Thanks for your care
Thank you all, the earliest blood tests I have booked, for next Friday. Seriously , I cannot get a GP appointment. It’s a 7 week wait in our area.
I just hope the nurse taking my bloods will expand the request that you have all said, as I only have blood forms for my very low vitamin D,
My vitamin D , was so low last time the doctors tested, but after a fight, they would only prescribe for 6 weeks. Now I know it’s as low, hair falling out, no energy and more. Yes I have tried and bought my own supplements
Seriously I dont think its,a nurse you should be seeing for blood tests , you should be seeing a doctor urgently.Having nose bleeds etc like that is not normal.You are not just an ordinary patient but with a serious condition with complications.I would go to A &E
Please go to your GP, and or hospital as soon as possible and get help, also photograph anything of interest as evidence, symptoms like these need to be supervised and sorted out. We live with an unstable disease and lots of things can effect it. MaryF
I’ve just posted a update, I’m in hospital now , my blood went down to 50. I have just had blood infusion. I felt like I was going to die, honestly.
I am feeling much better now, but still weak, and headache. Hopefully going home tomorrow. Thanks for your care
Red nose
Bleeding disorders alongside APS
Bleeding of the brain
Clear liquid suddenly streaming from nose has anyone else ever had this?
Has anyone just started bleeding with no warning while on warfarin
