Warfrin

Seems my aps is getting worse had stroke then mini strokes now since my last ct scan shown I've got micro clots on my brain prof hunt told me I had had strokes but only lasted very short period of time 😐started off on 6 mg of warfrin the 6 and 7 alternate days and graduated up to now 13

Has any one else had there warfrin go up like this ?

18 Replies

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  • Hi, I hope you are feeling better! Glad you have Prof Hunt looking after you, and yes others on here have had similar happenings, but not me! MaryF

  • Why though ? Is my aps getting stronger

    Prof hunt said if I was to stop taking warfin I would have a stroke 😐Seeing here again in November think she's going to ct scan me again to see if I've had any more micro clotss

  • Hi Tim,

    Sorry to hear you're having trouble. I had the same with warfarin. I got had been taking it for 6 months along side heparin injection to try and become therapeutic- with hope to stop the injection.

    I stopped the injections for a week and then was put straight back into it. I got up to a 17mg dose. Along side 80mg of heparin and my INR dropped to 1.6.

    That being the 3rd attempt to start warfarin, my heamotologist decided I am somewhat resistant.

    Have you tried heparin?

    Rx

  • So what do u do if ur resistant? I have trouble am on 18-20 mg (see my post) 💋

  • The amount of warfarin that you take is not important, keeping in your therapeutic range is. We all metabolise things differently and you have probably changed things about your life style, foods, drink, exercise, stress and medications since you first started taking it plus you are getting older which changes our bodies too. So many factors can play into how warfarin works. You must look beyond your APS to your whole life style to see what you are doing differently since you first started taking it.

  • Hi Tim,

    I agree with what APsnotFab has told you. It is the INR that is important to keep at a steady level. It is very difficult with Warfarin but it is probably the most effective treatment for our illness today.

    I wonder if you selftest?

    Best wishes from Kerstin in Stockholm

  • On the advice of my diagnosing hematologist, all those years ago, I kept a log including foods, activities, amount of water consumed, other meds-and I found everything -EVERYTHING! impacted my INR. levels. ( even amount of sun exposure!) But after a few years, I was able to predict which food or activity would raise or lower INR and so compensate an up with a down and vice versa.

  • It's all such a nightmare!!!

    What does sun do? I'm off for 2-week sunshine holiday 😮

  • For me my INR rises a bit. Enjoy your trip!

  • Thank u. 💋

  • Aloha from Hawaii!

    I too, agree that the dose of warfarin isn't important, but getting your INR into therapeutic range is. And it is a good idea to keep a daily log of what you eat, meds taken, etc. I discovered that some antibiotics shoot my INR way up to 10!

    Take care of yourself.

    Kerstin from Hawaii. ..

  • I'm in a similar situation to you Tim, over the past three months my dose has gone from 3mgs daily to 6mgs daily. My Inr is kept in range 4.0 - 4.5 with self testing and minor adjustments to my warfarin. I too had another stroke when I had an Inr of 4 and since seeing prof Hunt and her team have been diagnosed with cerebral small vessel disease and my scans show evidence of over 30 strokes and I'm undergoing further tests. Does that mean my Aps is worse? I don't think so tbh I just think it's taking a different path from many other peoples Aps. I've also been told that no matter how high my Inr goes I am under no circumstances to skip a dose of Warfarin. Last week my Inr peaked at 5.2 so I reduced the dose by 0.5mg for one day only and it returned to range. I just think there are no hard and fast rules that apply to everyone with this condition.

  • Thanks 👍

    Good luck

  • It could have to do with the green vegetables (how much you take to compensate to get the INR stable) ) and also that the Doctor wants you on a higher INR today than earlier.

    Kerstin

  • I did slowly went up to 16-17 mg/ day, but wasn't having micro clots that I'm aware of. I spoke to my hematologist and was switched to LMWH based on my weight and like it much better. Good luck, keep us posted.

  • I'm sorry to hear u r going through so much.

    I began 2 years ago on 5mg of warfarin and now fluctuate between taking 18 - 20mg daily.

    It's the highest dose my tester gives/has given but it's what I need to keep my INR high enough. I'm lupus anticoagulant positive which doesn't help as my INR fluctuates for no reason!

    I'm tested each week and dose adjusted then. More tests if I'm out of range.

    When my INR drops below 4 I suffer what I'm sure are micro clots in my head.

    Good luck, I hope this helps 💋

  • You're on azathioprine aren't you? That's known to interact with warfarin and your dosage go up.

    Seen my neurologist today and he's doing a pet scan of my brain within the next month and then said he would start me on azathioprine if it shows what he thinks it's going to.

    Have you found any benefit to being on it - or has it just messed your INR up!!

    X

  • Was only on 50 mg daily then about 2 or 3 months ago prof hunt put it up to 150 mg max dose for me because of my micro clots on brain so what really now exactly what the benifit is untill I have my nxt cut scan

    Do feel a bit better with less aces and pains

    Good luck 👍

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