Blood clots and SLE

I am wondering if anyone else is on warfarin due to having blood clots. I have to stay on warfarin for life I have been told . They say if you have 2 or more unexplainable blood clots you have to stay on warfarin permanently. I have argued that I don't think my 2 clots were unexplainable, the first one in my brain was 3 months after having a brain tumour removed , I was put on warfarin but taken off it after 18 months even though the clot is still there and always will be , they have explained it's ok because of the way blood is flowing. The second clot was when I was in hospital recovering from Meningitis, the clot was in my groin and it was a large one , I had been in hospital for weeks not moving and I thought it was common to get clots in that situation that's why they give you the blood thinning injections. They insist that I have to stay on warfarin for life and so I am wondering if they think clots are lupus related . Anyone else had this ?

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  • Have they done any other tests? My husband is on warfarin for life because he has a Protein-C deficiency which means there is a higher risk he could develop clots. He's only had one DVT - but the test means he needs the warfarin.

    However

    webmd.com/lupus/arthritis-l...

    explains that blood clots are more common in people with lupus because of antiphospholipid antibodies.

    and this explains it a bit more

    ihtc.org/patient/blood-diso...

  • Thank-you I will have a look , I don't think they have done more test but I have my bloods taken regularly as we all do , don't know if they have ever looked for that x

  • Apparently 40% of patients with SLE are positive for APL antibodies - and half of them will develop clots. I imagine they will have tested for the antibodies, probably at the beginning when they made the lupus diagnosis, if they found them and you have had clots, they aren't going to take the risk.

    Does it bother you? I'm on anticoagulants too - I have atrial fibrillation and was put on one similar to warfarin but then my INR levels suddenly went mad when I had to increase my dose of prednisolone. It swung up and then back down within a few days and we couldn't get it to settle down so I was switched to one of the new generation anticoagulants which work in a different way so I don't have blood tests any more. My husband never has a problem, he knows exactly how much to take and his INR is stuck at 2.2!

  • Hi Buffy14

    I don't have lupus but I have had 2 blood clots.

    The first was in November 2014following an operation in my knee.I went through the heparin injections for 12 days and put on warfarin for 3 months.I Stopped my warfarin and then in April 2015 I had a second clot on my other leg and no operation had taken place.So more heparin injections and then warfarin for life.

    In Nov 2015 I was admitted into hospital with renal failure supposedly attributed to my RA meds so all meds were stopped immediately but by mistake the hospital stopped my warfarin so again I had to go through the heparin jabs and back on warfarin.I am still taking it but it seems to me that if I stop my warfarin I will develop clots.

    So I honestly can't tell you if there is any evidence to suggest clots can be lupus related but as I say I dont have it but have recurrent blood clots.

    I am not taking any chances as you can't mess around with these things so I will stay on warfarin .

    It was explained to me that when you have a clot that particular vein shuts down and the blood seeks an alternative through which to flow.

    If you are in any doubt about any meds you are advised to speak to your GP as we are all individual cases and would be unwise to cease any meds without consulting your GP first.

    Take care,hope you can find the answer,

    Crusee

    XX

  • Oh I know I wouldn't stop my warfarin I know it's dangerous to , I've argued with them but they insist I need to be on it so like you I am stuck with it x

  • I had the opposite problem in hospital once , was due to have surgery and a nurse had given me a heparin injection a few hours before so the op had to be cancelled.

  • Oh that's not good is it?

    You would think in a hospital staffed with professionals they would at least get it right.

    Just so as I don't forget to,take mine at 6 pm every evening we have an alarm set on my hubbys mobile phone and I habe packs of warfarin everywhere,spares in the glove box in the car,in my handbag ,in my shower bag I take when we go away ,everywhere I am awash with them - Almost paranoid you could say!

    Take care.

    Crusee

    XX

  • Hi Buffy14,

    Have you been tested for antiphospholipid syndrome ('sticky blood')? This autoimmune condition commonly overlaps with lupus and can increase your chance of blood clots. You can learn more about it at hughes-syndrome.org/

  • Is it a standard test in lupus diagnosis Paul? I did mention it.

  • It certainly is in specialist centres. I don't believe that there is a guideline to test for antiphospholipid syndrome in lupus patients though, so only those with specialist knowledge and experience may do it as a screening without obvious symptoms.

  • I don't know I will check next time I see a consultant maybe I have been checked and that's why they are so insistent I stay on warfarin, you were talking about that in another post with regard to headaches, I always had headaches when I was younger but since being on warfarin I only rarely get a headache, I hadn't associated it with warfarin until I read the post . I always just thought my blood clot after the brain surgery was just a symptom of that as I had numerous leaks of CSF following the surgery it was all a bit of a mess , head restitched a couple of times , lumber punctures to try to get rid of fluid etc .

  • If you have tested positive for antiphospholipid syndrome it would be likely that they would want you to be on warfarin for life, so it could explain it.

  • There is a VERY GOOD HealthUnlocked forum for APS/Hughes Syndrome/ "sticky blood"

    hughes-syndrome.org

    healthunlocked.com/hughes-s...

  • Thank-you everyone I am going to check if I have it next time I go to hospital x

  • I am permanently on Xarelto an alernative to Warfarin due to DVT in a jugular vein (rare location) then testing positive to Lupus Anticoagulant. (APS). These tests are normally done in hospital when a dvt occurs although not always if the clot is 'provoked' which seems to be your situation. I don't understand why Doctors don't seem to think it's important to tell patients WHY they make the decisions they do.

  • Because we are "not able to understand" it - shame they don't try us out occasionally!!

  • Well I have argued that my clots were provoked but they are still insistent I will ask my consultants and I will ask at my next warfarin clinic check aswell .

  • Yes I have lupus and something u can get called Hughes syndrome too (. Sticky blood) ask them about that as sometimes they go hand in hand I'm on warfarin for life as I have it and it just clots ur blood anytime for no reason. Best to ask them about it.

  • It may be that I was checked after the clots because I had lupus, I had had lupus for 6 years prior to the first clot which was in my brain they did lots of tests because i think they were checking for lupus in my brain and when I had the second clot whilst recovering from meningitis which had nearly killed me all my consultants came to see me in the hospital and so probably everything was checked thoroughly.

  • I have lupus and Im on warfarin for life. I had a clot on my lung last year and it hasnt disolved so thats why they advised warfarin life long. Im also protein S deficient and have APS too. It is a pain taking warfarin everyday Im still not therapeutic & my inr is up & down & have to get it tested every week for past year! Does warfarin cause hair to become thin? Mine is thin due to lupus but think its worse since warfarin.

  • It hasn't affected my hair but I am lucky to have very thick hair lupus hasn't affected my hair either luckily, maybe you could get some advice about that on here if you post about it , take care x

  • Hello

    My diagnosis is SLE/SS. I have Protein C deficiency. I have had 6 DVTs and 2 PEs. I've been on Warfarin for more than 30yrs.

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