DOAC anticoagulants

Hi all,

Has or is anybody medicated with Apixaban (eliquis)

Or Edoxaban?

If so, how do you find it? So you prefer it to other anticoagulants and why?

Thank you 😊

38 Replies

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  • Are these the medications they are suggesting for you? You should know that the ONLY DOAC that has been approved for this disease is rivaroxaban (Xarelto). If you go to our "Pinned Posts" to the side on this page here -> you will find the paper on the RAPS trial done here at St Thomas Hospital. It says that this drug can only be used on those whose INR was at 2-3 and who had venus clots. If people needed a higher INR than 3 or had arterial clots then they could not use it until further trials took place to access its safety.

    Other oral anticoags have not been properly accessed and should be discussed and considered with caution with your Doctor.

  • I will definitely look into that link. My body doesn't unfortunately respond as it should to warfarin so I have given up on that.

    I just looked into the plaquein meds and discovered that that's hydroxychloroquin which I also take 400mg daily and have had that the last 6 years

    Thank you for your advice

  • 👍and to add to what APS notfab says: ONLY a doctor VERY familiar with APS

  • I tried rivaroxaban several years ago and the brain fog was overwhelming. My memory became so bad that I regularly forgot where I was, where I was going and direction to places I had been to everyday for years.

    Because my options of medication and becoming quite low, and my injection site is so scarred, injecting is becoming impossible, he has suggested this. I think he said there has been a trial in it recently and other patients of his have done well on it. But you can't test it. Which I find scary.

    Rx

  • There are also no reversal agents as yet although they are getting close. As far as injecting sites, Ive been injecting for 6 years and Im fine. Where are you doing it? I use the whole area of my tummy to as far round the sides as I can go and vary sides daily, avoiding any areas that may have produced the odd bruise. Have you tried getting round to the side of your butt or the tops of your thighs? Even if you do it for a week or two it can allow the normal site to heal.

  • Id just add that I think from what you have said that you need to try getting the INR higher and mix in another oral anti platelet, saving the injections for occasional emergency use.

  • Yes I do the same. I was injecting twice a day for 3 years and now once a day for the last 4 years. I haven't objected my butt but I have top of thoughts and struggle with that. I have severe scarring under my abdominal skin so sometimes the heparin just forms into a ball as it's surrounded by scar tissue.

    I will attempt my butt tomorrow. 😶

  • I believe you can also do the fatty area under your arms near your arm pits but NOT your armpits. Ask your doc

  • Never heard of under your arms only on outside? Although this is pretty difficult on your own! In the leg seems to take ages for the bruises to go. I was told avoid belly button area but above, below and all the way round to the bum. I injected for over 10 years and did alternative sides/up/down & around, which meant I avoided the area for 6 days. Also put the needle in at an angle, seems to be less invasive.

  • I figure someone would have to help and I think we are talking about the same area... the jiggles under your arms some people have. Lol, sad😧

  • What dose of Rivaroxaban were you on? I've been taking 20mg (same time each day-important!) for almost 3 years. Last year I was in hospital and they were giving only half the dose and I was very foggy. I noticed that the tablet was a different colour but knowing that hospitals will always buy cheapest due to budget constraints-I thought I was a generic of my usual dose. (Have since found out from Pharmacy there is no generic). I couldn't keep a stable INR and after 12 months on Clexane developed a clot and hence the reason I was changed. I also take 100mg Aspirin.

  • I started Apixaban in October after becoming intolerant to warfarin and dalteparin injections after 29 years. I have never felt better the brain fog and other symptoms have disappeared. It's the best thing I've done. It was hard to get used to not being tested but I'm over that now and enjoying feeling better.

  • That's a great review.

    I'm feeling very cautious but it would be nice but to infect. Even if it's for 6 month to let the injection site heal.

    Can I ask your age Jane?

    Rx

  • Hi Rosie, I'm 54 I've had lots of clots (lungs and legs) and a stroke aged 25 following a miscarriage at 6 months. I had a daughter 3 years later and used heparin while pregnant then stayed on warfarin for 29 years but the last 2 years I had lots of problems becoming intolerant to warfarin and heparin do my consultant at Leicester told me about Apixaban which I was nervous about but I feel so much better and I've been able to lose weight as food doesn't affect it. X

  • Sorry Jane, I have just realised you have answered already. Typical APS 😂😂

  • Hi Jane, I hope you're well. Coming back to this conversation. I was curious what your full diagnosis was? Have you experienced a stroke due to the APS?

    What was the treatment for the clexane (heparin)that you were prescribed to take and how often?

    I know it's a lot of questions I'm just wondering if our cases are similar..

    Rx

  • Hi, warfarin didn't work for me, so under my GP and with Prof Khamashta's agreement I moved to dabigatran. The only reason rivaroxiban is approved is because the study was done with them as they are a bigger company than with the co that make dabigatran. So although mine isn't officially approved for APS, London Bridge have no issue with it. And it has an antidote (as it's such a small company USA put the funds up for research for an antidote and last Dec that have one available. I love it and have been on it for over 3 years, but it suits me as an individual (take it twice a day, 12 hours apart). No testing (when I get older they'll keep an eye on my liver function) but currently it's perfect (don't drink or smoke - don't even drink tea or coffee) so all's well. But you need agreement and support of your GP (I work with 5 of them who also support me as well as my own surgery, and my consultant. Currently feel very blessed and lucky as I have no symptoms and live a good life (I'm 52, and work FT+ in the NHS). Best of luck with your choice. X

  • Hi Chrissy,

    That's interesting too.

    My heamotologist did mention this one and then changed his mind due to potential side affects.

    It's good to hear there is an antidote too.

    Thank you for the advice Rx

  • The only 'occasional' side effect I get is indigestion- only with my night time pill. If I take it then lie down I can get indigestion- so I make sure I sit up for 15 minutes, then all's well! (My dad's on Apixaban! So between the two of us we have 2/3 covered)! :) you need to be comfortable as does your gp with whatever you choose. X

  • Chrissywhere are you? From

  • I'm from Surrey, Uk. Been working for doctors surgeries for nearly 11 years - still took 18 months to diagnose APS (even after multiple bilateral PEs that the consultant has never seen so many PEs in a pair of lungs and said they didn't know how I could get any oxygen through my lungs to breathe! Very very lucky! He said someone was so looking over you- no stroke of heart attack they were amazed! But dabigatran (pradaxa) really suits me and has done for over 3 years. Xx

  • Hi Chrissy,

    I'm in uk too! Rx

  • Where in the country r u Rosie? X

  • I'm in Portsmouth Rx

  • So what does you say feel about apixaban? Is he also an APS sufferer?

    I have heard it can upset the tummy

    Rx

  • Dad's on it for AF. Has no side effects, but it is licenced for AF ( they all are!) xx he's been on it for about a year. Came off warfarin after about 15 years.

  • I have been on Eliquis for a little more than two years now with no issues

  • Hi Tobias, can you tell me your full diagnosis. What was your prior prescription before the apixaban?

    Have you suffered a stroke from APS at all?

    Rx

  • I have not had a stroke, I was diagnosed APS after splenic and renal infarctions. I have only been on Eliquis and was also recently diagnosed with Lupus so I take Plaquenil, (which was also shown in a study to reduce amount of Antiphosphilipid Antibodies so I was trying to get on it anyway). I don't have the link to that study handy.

  • I'm on apixiban for 6 months now and it's great. My APS specialist trained with, and still works closely with, Dr Hughes. I'm almost migraine free now, but while on warfarin they were extremely debilitating. My INR was very erratic, so I had labs every couple of weeks. I couldn't do self testing. It's great to eat healthy foods again, and, no more black hands from the blood draws.

    I take mine at 8 o'clock, and have no trouble with any side effects whatsoever. Apixiban has really improved my life. My life was quite bleak before.

    I have the 3 antibodies, hashimotos and sjogrens.

  • I was told by my hematologist that he prefers warafin easier to stop bleeding, how do they stop any bleeding with apixiban? Did they feel this would improve your migraines? I have an INR of 3.8 I do self test but migraines are daily, I tried Botox first shot helped second round still had headaches and the worst anxiety ever so I am wondering if the warafin could be the cause of the constant migraines, any help would be appreciated

  • I really suffer with Anxiety too edgewater. Have you tried kalms? I have just started and feeling slightly better already

    Rx

  • I don't know if it's "easier" to stop bleeding with warfarin or other anti-clotting meds, but there are ways to stop bleeding on apixiban. I've heard that there will soon (as in 2017) be a specific antidote.

    My specialist thought I should try it because my migraines were so severe, and I tried all the preventives. On apixiban my migraines are much less frequent, much less severe, and are easier to head off when I feel one starting.

  • I agree, warfarin is a really nasty medication.

    You can't eat vegetables that's good for you because of the vitamin k level.

    The amount of hair I list was ridiculous and my overall feeling was horrible!

    Rx

  • Hi Tofino5,

    I am very interested in your opinion and still trying to make a decision.

    So can you tell me a little note about your full diagnosis. Any symptoms you experienced. Have you ever had clots or a stroke?

    What was the medication you took before the apixaban? Dosage and how often?

    I am just trying to see if we have similar dosage needs to see if it will suit me too?

    Sorry to ask so much.

    Rx

  • Hi Rx,

    Sorry for my late reply. I think the most important thing is to get with an APS specialist who can review your specific needs and symptoms - they vary so much. We might look alike, but not have the same personal needs at all. I see you're in Portsmouth, but I don't know if you mean UK or Ohio or Maine ... Can you see a specialist?

    I was on warfarin before (specifically Jantoven - a brand name generic), 5 or 2.5 mg on varying days. The dosage doesn't matter since how each person metabolizes the med varies greatly. My INR was never stable.

    I have the 3 antibodies in high titres, hashimotos and sjogrens. I've had pulmonary embolisms and a DVT in the thigh.

  • Not a problem Tofino5,

    I'm in Portsmouth UK.

    You?

    I have considered contacting Southampton general hospital as suggested to get further advice. It wasn't until I joined this that I felt there was still a lot I didn't know.

    Even with being diagnosed 8 years ago.

    I started to query if I was sjogrens positive as some of the symptoms sound familiar to me so I will request that in next test too.

    Are you able to be referred to a different city hospital for specialists?

    Rx

    Rx

  • I'm in the US, where APS specialists are few between. It seems the UK is generally ahead of things related to APS.

    Maybe post a new topic asking for help with finding someone in your area? There are a lot of UK members.

    Don't feel worry about your level of knowledge, just keep asking questions and reading and researching. It is really a process - and the list is really helpful!

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