Hello, I am on Warfarin with target 3-4.5 and Heparin if it falls below 3. Well the last couple of weeks the INR again been up and down and then the last few days it has dropped to 2.5 (I test myself with inbetween visits to hospital or gp) I have given myself Heparin but cant below how I am bruising, I know that in the past I have bruised easily when injecting but why is it when the INR is low I bruise and have nose bleeds. You would think as its not as thin the blood I would get less????
Low INR but still bruising: Hello, I am... - Hughes Syndrome A...
Low INR but still bruising
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daisy11
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Hi Daisy
Even though your Target is 3-4.5 and your INR is below this at 2.5, remember that all these figures relate to 'normal' being 1. 2.5 is a therapeutic dose for many people and will still cause you to bruise more easily.
See if you can text/phone in your INR once a week to whoever you deal with for warfarin dosage. That way you'll stay on top of it with professional help. Less needle sticks mean less bruising! I hope that works for you. John.
Hi Daisy
I'm on Fragmin now, full time, after being on Warfarin for 10 years. I had to convert to Fragmin after Warfarin seemed to stop workin for me in relieving my symptoms.
I bruise badly at some injection sites and not at others; I think it is just luck as to whether you hit a blood vessel or not.
Best sishes.
Dave
Hi Dave, I have been on Warfarin for 40+ years and it was quite stable for a while but over the last few months my levels have been fluctuating between 1.1 and 4.7. I have had to go weekly for the past 3 months as the nurse cannot leave it so unstable. Did you have this problem with Warfarin? Also how did you get to go on Fragmin? Did your GP or consultant recommend it? Sorry so many questions but I feel so ill most of the time and wonder if this is the problem. At 4.5+ I start having nose and mouth bleeds and feel a wreck - sometimes so difficult to even get out of bed. I am 65 and am only just getting sorted out to see a consultant!
Best wishes, Monica
Hello Monica
I did have some fluctuations of INR but I used to self test, daily or every two days, and self manage.
My problem was that I started to get 'funny turns', sensations that I had been pushed or turned, or the floor bouncing, and alos very muzzy head, diziness, memory issues and a sense, sometimes, that my arms and/or face were covered in cobwebs.
I saw Prof Hughes and he suggested that I try switching from Warfarin to Fragmin to see what difference that made. At first it did make a difference, in that my funny turns had gaps between them but clustered. Now, after a year on Fragmin I am feeling so much better that I did on Warfarin that my GP and I have decided that I will keep on Fragmin for life.
Fragmin is easier to deal with than Warfarin, in that it is not affected by food and drink, does not require blood tests and is one shot in the morning, so a 'fit and forget' item, in engineer's speak. Also, I understand that Fragmin is not such a risk as Warfarin in terms of bleeds. The downside: well, if you don't like needles, you soon will; and it does give you a bruised tummy; one of my consultants said, "it's not 'Speedo' friendly is it."
Good luck and best wishes.
Dave xx
Hi Monica you have made me feel so much better I have been on Warfarin for 16 years, and wanted to know who has been on it longer than this, and spotted you have, may I ask you, have you been on it for 40+ years for APS / Hughes or for other health reasons.
Hi Cherrydi, I had my 1st PE when I was 26 just after my son was born, then had 2 more over the next 18 months. I have had 13 dvts and two internal heamorages (excuse spelling). I am now 65 and only diagnosed with APS and Lupus co-ag in 2001 because my daughter took me to her doctor who actually took the time to read my notes and see that I had 5 miscarriages and all these other peoblems so she did the tests for me, but I've only been dealt with by GPs or nurses. I had one visit to a heamatologist in 2002 because my father was a hemapheliac and they couldn't work out how I (as a carrier) could have all these clots. She said I had rheumatoid arthritis and recommend some ibuprofin - didn't do anything for me. Now in agony at nights with the pains in my legs, can hardly move about in the day and so dizzy/foggy all the time. Don't even like socialising now because I feel people are looking at me when I come over with a funny turn. Sorry bit long but hope that helps you. Monica
Hello Monica yes it does, thank you, I am sorry it took so long for you to be diagnosed, are you on Warfarin now, I was not sure I was able to take anti-inflamotores, of which ibuprofin, is one of. Was you on Warfarin and or Aspirin when you were prescribed it?
Yes, I am still on it but I wrote to Prof Hughes a few weeks ago with a full medical history from birth to present date with a list of all my meds. He wrote me back such a helpful, useful letter and confirmed I need to get properly treated as soon as possible, He asked me to ring which I did, to see how best he could help me, but as I am on a state pension I cannot afford to see him privately so have been referred to Prof D'Cruz at Louise Coote. I know it will be a longer wait but at least I feel as though I am getting somewhere at last. He did confirm that on reading my history he was totally in agreement with my previous diagnosis but felt there were other issues here too which have not been diagnosed. Really looking forward to getting the right meds and moving forward. I have never been on aspirin - was on heparin then warfarin and stayed on it. I was on it with the ibruprofen and wonder if that was what made me worse. Don't know but never taken it again! Please feel free to talk to me anytime if I can help you. My best wishes are with you for getting sorted out soon, Monica
Hello Monica
I have had my diagnosis since 1992 but since moving away from Kent have not seen any specialists at all, so am seeing one on 31st May. I am sure I was told I can't take Ibrupofen. Prof D'Cruz is very very good, do you know when you will see him?
Unfortunately no. I only spoke with Prof Hughes last week and a referral has been sent from one of my consultants at St T that I see for my Polio issues. He did the letter this week so hoping it will be soon. Where are you now? Have you good specialists in APS where you are? Monica
I have one I have just found out about from the Hughes foundation, and that is who I am seeing on 31 May at Lincoln Hospital
Never take NSAIDS with warfarin. It does increase the effects of the warfarin
Yes agree, unless advised by your dpecislist as combined treatment.This is a very old post now so I'm turning off.
Hi, Bluebutterfly
After going on birth control besause I was going back to school to get my RN I had 5 PE's hit at one time and was in ICU for weeks. They did a Dewees veina cava CLIP- they don't do these anymore because everyone died but me. My M.D., said I should have died 30yrs ago. The complications were stasis ulcers. After 7 skin grafts I am still having P.E's and strokes. My Doc. said the collateral circulation has made it's way around the clip. I not only have APS, but found out I am allergic to Heparin. . Thanks for your story. It lets me know there is someone out there. This is my first time here.
Kikicol
I take warfarin. Have done for 30 months. It has never been particularly stable for me. It is almost unusual if I dont have bruising if I am in my supposed correct range. Also if I am in the supposed correct range I seem to be more fatigued than usual.
I have mentioned this on quite a few occasions but each time have been told it has no bearing.
My head feels really foggy now and I am having to struggle to concentrate. I feel like I need to lay down or rest constantly.
Is fragamin the injection alternative. I am needle phobic.
Is there an alternative oral option?
Hi, it could be related to platelets. I have read that abnormal bruising for APS patients could be down to platelet issues (I think dr. Kamashta told me that platelet count is low, but platelets are not low; they are just clumped up together and don't register on the blood test). This can be treated, from what I understand. Can you ask the specialist you are seeing or your GP?
So Fragmin has smaller needles than Clexane?
An example of the instability of warfarin for me.
Target INR 2.0 - 3.0
22.02.13 1.7
27.02.13 1.9
06.03.13 2.5
14.03.13 2.7
21.03.13 1.9
28.03.13 2.4
04.04.13 2.7
12.04.13 3.4
18.04.13 1.6
25.04.13 2.0
02.05.13 4.5 *****
For the vast majority of the time my dose is unchanged. But the INR result really swings around.
I really feel groggy when the level seems to rise, whilst most of the rest of you seem to feel better.
hi very much similar, my head goes weird below 3 and over 3.5 so I have to try and master the funny turns. My consultant wants me to be from 3-4.5.
I am having an op shortly and I wonder what they advise.
Yes have APS and PBC/AIH and others and the doctors keeping saying complicated which then puts me right off, I was advised at ST T concerning a biopsy at local hospital not to be on warfarin and to stop it and the consultant here said to carry on, however, I did not get to have the biopsy done and I shall take advice at ST T in future, still waiting for forthcoming op
Don't worry about the bruising as it always looks a lot worse than it is. I'm quite active and like doing all the things a 30+ guy should. The amount of times I should have visited hospital for severe bruising I can't count. In saying that if you have a fall and your in any sort of pain or discomfort seek medical help. I should start following my own advice. Take care. 
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