DN been taking my bloods again to day cos they got it wrong yesterday so the got it right to day just had a phone call from hospital they sed my INR is bad it's 1.3 it sould be 2.5 it was 1.7 last time but I've not been well for 2 days felling like iv got flu but know I not got it my chest hurts and been weazing but not coughing any think up DN told me to phone doctors but iv not done it got distracted cos OT came out to see me so now i may get my hand rails so I don't have to crawl up stair any more he's all so going to get me some think to make me sofer higher and get the right people out to get Me right I have now put in for PIP so just wating for the forms to come then will need help filling them in thank for letting me go on and on Lesley 61

12 Replies

  • Hi, I hope the hospital has given you the correct dietary advice regarding your INR and Warfarin, the diet needs to stay consistent, others on the same drug as you will also suggest this! It is crucial to try and keep it as regular as possible. MaryF

  • They told me just up my meds to 2mg mon to sat then 3mg on Sunday so i was on 2mg mob to sat and 1mg on a Sunday so not chage just hope it goes up next time think that's y I not felt well Lesley 61 x

  • Has anyone suggested to you to take Heparin injections until your warfarin is stable enough to get your INR at the target range? If I were you I would be suggesting this because 1.3 is barely above the normal persons INR and certainly much too low for somebody with APS.

    If the Doctor moans about the cost just tell him/her he'd moan even more with the cost of looking after you if you have a Stroke! I really think you need to put your foot down now or get your husband to do it and insist upon it to make sure you are safe and adequately anti coagulated. Good Luck!

  • No ones sed nothing I have phone the doctor this morning for a phone back cos my chest still Sam sort of breth and I hurt all over my back hurts too so they sould phone back about 11 30am this morning told them my INR is 1.3 and my blood pressure when I stand up drops its fine when I am sat down cos the OT did my blood pressure yesterday so will just have to see wot they say I am on my own now till my husband finish work at 4pm but I am ok so will let u know wot they say xthanks Lesley 61

  • I am glad and relieved to hear you got the needed hand rail. Warfarin is cheap and you only have to swallow pills on a daily basis -- but -- diet, activity level, your body responding to teeny tiny "not enough to get you sick because the immune system killed it off quickly" infections will all effect the INR. Injectibles sound more dauting. But I found when I bridged from warfarin for my surgery last year, injectibles are really much easier! Lay down on the sofa; wipe a piece of your tummy with alcohol; insert needles straight down (and no, it really doesn't hurt that much;) push plunger; withdraw slowly; and Go! Eat whatever you want, exercise more or less, no constant blood tests.

    If your doctor should suggest it -- go for it!

  • No not got the hand rails yet hoping to get them soon and doctor just phoned me asked how I was feeling he sed we can go 2 ways can treat it as a chest infection and give u amoillcillin for it or admit me to hospital to get you looked at she'll we put u on tablets fist and see how u go on are u happy with that or send u in I just sed I will take meds first see how I am iv had enoth of hospitals he sed if u get worse or any pains in your chest let us know we will send u in and the DN and told them how I was yesterday so fingers crossed they will work and for having injections he sed that's up to the INR clinch he sed they chaged your meds for u have they not thanks lesley61

  • Please be aware that antibiotics can further mess up your INR and can cause it to go lower! If you start to feel worse or even get no better I would take them up on the offer of going in as much as you don't want to. Better to be safe than sorry. I do hope you start to feel better soon.

  • Yes I know so just fingers crossed when was on them last time they leveld it out but if I do get worse I will go in don't worry and thanks xx Lesley 61

  • I feel so sorry for you as im going through the same thing myself. I ve been on warfarin for 9 months now and they still cant et my inr's right. ive been told levels should e between 3 an 3.5 and when they do reach it I feel good but ive only had it reached for2 weeks in all this time and that was when I self administered the warfarin. I have now decided to do it continuously unil I reach my level and can maintain it for month or more. My co-agulation team said it had to be 2.5 as most heart patients. When I stated I wasn't a heart patient but had lupus and aps they said it would have to come from my docs. I contacted my GP and was told by them it wasn't their responsibility so have now got intouch with my consultant. He said hehad dictated a letter and sent it to my GP who then had to send to the coagulation team and if they read it will sort out my warfarin.

    Sorry mates ive no faith in the lot of them and am taking matters into my own hands. Ive told the co-ag team what im doing and getting tested very14 days and they told me on the side) im doing the best thing really as only I know how bad I feel. What a joke.

    Still tomorrow is New Years Day start of a new year. Will get it sorted this year.

  • Yes I know wot u mean iv only just come out of hosptals a few weeks back thinking I had anther stroke but they sed they did not think it was but will send me for more test I have my INR done evey week at the hosptals it's only been right 3 weeks in a row iv only been on warfin for jun I think I never feel any different when it's up or down apart from this time I am putting down to my blood pressure going down when I stand up when Im sat down its fine and my INR is 1.3 so it's low DN was think it could be blood clots but I don't think it is I think it's just. Chest infection so will see how it goes nice to here from udiane1428 thanks Lesley 61

  • Thanks so much for emailing me - I don't feel so alone now. Im on 7mg per day and intend to stay on it until my INR is atleast 3.2 the last time it was only 1.7 and I couldn't function. Hardly able to stand up and hold food down let alone all the aches etc. My docs are way out of their depth. If I go to them they rush me to the A & E who keep me waiting hours and then are afraid to deal with me so I come home and have to go back to the docs. They then send a fax to my consultant and I have to go back 24 hours later. He or his registrars then look at me and tell me what I need to do but then getting the coagulation team and my gp docs to do anything is a nightmare.

    It has taken them 40 years to find out what is wrong with me and that was only because I started having up to 15 seizures a day 18 months ago. Its been a long battle - I just wished they had diagnosed a year earlier so that we could have had my daughter tested before she tried for children. Now she cant have them because of aps. Very sad.

    However on the up is that it is 2015 and im going to fight to get lupus and aps acknowledged as something that is out there- so for all you GPS who are ignorant, or frightened of this illness WE ARE THERE and we are going to make sure you know it.

  • I only take img 2mg Monday to Saturday then 3mg on a Sunday and my INR Is 1.3 that y I think I am not well I am just hoping it all gets sorted out soon as I go off on 16th January only 4 days then come back and have my bloods done so I can have my tooth out at the hosptal that day finger crossed and hope u get sorted and we are not alone keep in toch where are u I am in West Yorkshire x

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