Hi all

Only ever had slightly positive aps tests for the 5 years I've been ex with lupus, was always told I didn't need blood thinners because no stroke or clots

However for three years I've been having weird visual disturbances that no dr can explain after 2 clear Mri scans

I was pregnant twice last year and they gave me heparin due to slightly positive results of aps and previous pre eclampsia

Lost both

Now it has been suggested I may have to be put in warfarin which I'm petrified about

Just when u think things can't get any worse with this bloody condition something new always crops up

Currently on 2 be flare of nephritis most Limey down to the pregnancy

I'm 36 and petrified of all these illnesses and medications

With warfrin I've read u can't eat certain things do certain things etc

The inr is up and down and doses are altered etc risk of bleeding

Is anyone else on this ?? How do u cope ?

Many thanks xx

17 Replies

  • Warfarin isn't half as bad as you think! My husband is on it for life due to a protein C deficiency. He takes the same dose every day of life and his INR barely moves. I was on a relative of warfarin for 3 years and had very few problems - until suddenly it went haywire after I had to change my pred dose. It was too much like hard work to sort it out (we did try hard) so I was put on one of the new generation anticoagulants.

    I can't think of anything you can't DO. You are not supposed to eat a lot of dark green veg - which unless you are a fan of spinach or kale shouldn't be a problem. If you do eat that sort of thing, you do need to keep eating it while getting your INR sorted at the start so it is taken into consideration - here in Italy they don't tell you "don't eat..." they just say "don't chop and change your diet with certain things". If you usually eat spinach once a week, keep doing do all the time - don't suddenly have spinach 4 times one day after another.

    Providing you have regular INR checks and react if it starts to rise or fall you'll be fine. My husband never has problems in the form of bruises. I had bruises when I started the new gen anticoagulant but after a couple of months it all settled down. If you hit your head hard for any reason you need to keep an eye out for any feeling bad and see a doctor if you do.

    But like everything else - you get used to it and after a while you don't think about it.

  • Thank u

    At the hospital on Thursday so will find out more xx

  • Hi PMRpro,

    I was also on Warfarin for life after two DVTS in left leg. I also suffer from SLE. My GP recently took me off Warfarin and put me on Apixaban.

    They work a treat and the best thing about them is I no longer require to have my INR checked.

    Have your husband speak to his GP to see if he could swap. The tablets are Eliquis apixaban 2.5 mg.

    Good Luck

  • He's perfectly happy on his warfarin! We live in Italy, to be put on the new generation stuff requires approval from Rome every year! It doesn't affect what he eats - don't think any of the forbidden things have ever passed his lips in 65 years! He's a creature of habit - practically autistic spectrum - so I'll leave it to a doctor to suggest it!

    I asked about swapping - I had been offered it in the early days when there were no antidotes and at the time I declined graciously as I prefer other people to sort out the downsides of new drugs ;-) The Pradaxa has been fine, no problems and, as you say, no finger sticks!

  • Hi I am 38 I ve been on warfarin for about 5 years and I am in it for life, the only thing you shouldn't eat is cranberries and special k as these affect it apart from that eat what you want. It hasn't stopped me from doing anything so far (although looking in to scuba diving and not sure I can do that) you have to be careful if you bang your head and have regular inr checks mine doesn't stay stable all the time, depends on my flares but you get used to it and I don't really notice a difference now. Don't be scared of it if it helps you. Hope you get sorted x

  • I think you have got a bit confused - it is foods with a lot of vitamin K you mustn't eat with warfarin, not Special K. Mind you - it's as good as reason as any not to eat it, I think it is disgusting!

  • Ha maybe so I just remember the warfarin nurse saying not to eat special k, I must have missheard but I was dealing with a PE so probably wasn't listening 😂

  • If you'd had a PE I don't imagine you were too aware of anything!!! ;-)

  • I'm 64 and have been on warfarin since I was 28 years old. Had numerous miscarriages due to APS Hughes syndrome. Also ex Lupus like your self. I'm fit despite my early problems, I just go for it. I've done Scuba, mountain biking and lots of walking, some high altitude. I bruise a little worse if I knock myself but often that is just everyday life stuff like knocks on furniture.

    In all those years I have only had one real problem when my INR rose and I needed vitamin K, but I was not hospitalised just advised not to do anything risky.

    I've broken bones and the warfarin presented no problems.

    I eat a healthy diet, love spinach less than once a week tho' and cranberries only with Xmas dinner. I moderate my diet it is much easier than you think.

    It feels like a stress at first getting doses right but you will stabilise, I go for an INR about once every few weeks. while I was working my GP surgery always fitted me in early before work, now I'm retired I go mid morning.

    Eat well and regularly (important!), relax, you will be able to have a good life.

  • You need a Hughes Syndrome/antiphospholipid specialist.

    More information in links below.



  • Thanks ladies

    At hospital tom but I'm def looking into seeing a expert in this this field xxxxx

  • I started on warfarin over a year ago, following a clot. I have aps too & lost 2 babies late on in pregnancy, so sorry for your losses too I know how difficult it must be for you. Im 38 but had 2 sucessful pregnancies treated with clexane & aspirin, obviously my pregnancies were very stressful and I did worry about the effects of taking these meds while pregnant. I like you hate starting new meds my INR has been eractic since I started warfarin & I have mine tested every week this past 18 months! They have contacted haematology to explore an alternative to warfarin which I dont want to take! Like you say things are never straight forward with lupus its just so frustrating. I have no real side effects from warfarin its just a pain running to the drs every week for my dosage x.

  • Hi poodlegal, my daughter has to take anticoagulants for the rest of her life after she had a spontaneous massive bilateral pulmonary embolism 18 months ago for no apparent reason , she's 29 and doesn't have APS or any other condition that seems to have caused it, it was life changing for her but she had no choice but to adapt to those changes and has got into the routine of taking her meds etc and life is pretty much normal now and it didn't take her long to adapt, it's like PMRpro says about not chopping and changing diets and not over indulging on green veg, also being careful when considering OTC supplements too, always ask your gp's or haematologist advice before taking any. It doesn't take long to become aware of the do's and dont's.

    She started off with warfarin after she was thrombolised then changed to rivaoxaban a few months later and has now just started clexane injections as her and her husband are trying for a baby, the injections are a bit more of a bother. She has an alarm set on her phone to remind her every evening. When I tell consultants about my daughters embolism and say she doesn't have APS they seem puzzled given that my dad had SLE and now I have it, they seem to think there must be something underlying going on.!

    She also wears a bracelet with medical info in case she's ever taken poorly or in an accident.

    I hope it all goes well for you and you soon get into the routine of it, it's no fun is it when there's so many other health issues going on.

    Wishing you all the best


  • Thank u both

    Diane I wish ur daughter luck and wishing her a wonderful pregnancy xx

  • Hi Poodlegal, I've been on Warfarin since 1985, it's honestly not that bad. Diet can effect INR - anything with Vit K should be avoided or taken in moderation. Vit K is the 'antidote' to Warfarin- it slows down the blood thinning action of the Warfarin. You can then get things that need to be avoided because they cause the blood to thin too much. NSAIDS for example. General rule of thumb, don't take any over the counter products. My GP has an alert on my file so that he doesn't prescribe anything new without checking its interaction with Warfarin. My INR changes lots because of my particular problem (protein C deficiency) but most people that I know who are on Warfarin are far more stable. Also, in my area, the blood tests are thumb tricks, with immediate INR result. It makes a huge difference. Please don't worry too much, there are far worse medications.

    Best wishes

  • Thank u Maurice I know steroids are awful drugs can't be worse than them x

  • I am on warfarin backin 2002/2003 I had it for 6 months but been on it now again for the last four yrs but I'm now on it for life. Yes u do have to go careful with various things not eating to many green veg i.e. Sprouts cabbage kales etc. As to many greens is not good on warfarin also it's advisable to not drink alcohol when I was asked how many units I had I said 30 they panicked as they thought I ment per week they were relived when I said no per year. As u need to be careful how many units u have. Also u need to make sure u don't have things like flu powders as they already have aspirin in them and also u need to make sure u don't have any cranberries.

    If u did cut urself make sure u apply a lot of pressure and if not stopped after 5/10mins seek medical advice also I'm prone to nose bleeds and it the same apply pressure then the if still the same after 5/10mins phone for advice

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