Women: DVT, Rivaroxaban, heavy menstrual bleeding side effect

[Jeanie42]

Please can anyone advise / share their experience. I am a 42 year-old woman recently diagnosed with a DVT following a long-haul flight. My only risk factors were my age (40+) and being on the pill (to treat another medical condition). I've been on rivaroxaban (Xarelto brand name) for 5 days, which coincided with my period. I've been bleeding very heavily since I started the meds, including passing large blood clots (almost the size of the palm of my hand). It doesn't show any signs of stopping - if anything it is getting worse. I also have some mild abdominal pain. How worried should I be?

I talked to my doctor two days ago and she said the side effects should go down, but so far that is not the case.

Background - I suffer from heavy periods anyway and had surgery just over a month ago to remove a small uterine fibroid. It was the second one I had removed, the first was much bigger and I had surgery 4 years ago to remove that. I think the surgery would have healed by now, but I'm not sure.

[AlisonClark]

I had the same problem when I started taking warfarin. Periods were so heavy that I could barely leave the house. Eventually I saw a gynaecologist and was fitted with a Mirena coil. Now I have very little bleeding.

Hope this helps

[Jeanie42 in reply to AlisonClark]

Thank you Alison, that is really helpful. I'll look into that as an option. Can I ask, are you in the UK, and if so how long did it take for you to be referred to a gynaecologist on the NHS? With Rivaroxaban the standard course of treatment is for 3 months, but I'm not sure I can really cope with these side effects for that long, it is just so exhausting and debilitating.

[AlisonClark in reply to Jeanie42]

Yes I'm in the UK. Unfortunately it took the standard NHS time, but your GP surgery may be able to fit the coil.

When I went for a review about coming off the warfarin they basically said that because I'm overweight that I should just stay on it! I've learned to live with the side effects. The bleeding was the worst and I agree that it is exhausting and debilitating. I couldn't go anywhere really during my periods because I would need to change every hour and it was just draining.

[Jeanie42 in reply to AlisonClark]

Thanks very much Alison. I will talk to my GP about it.

[Jeanie42 in reply to Jeanie42]

I'm quite glad I'm not on Warfarin... at least with Rivaroxaban I should be off it in 3 months if I'm careful. So hopefully only two more months of menstrual hell Thanks for the support Alison!

[HermioneGranger in reply to Jeanie42]

Hi Jeanie42. Please be very careful of staying on oral birth control after a DVT, particularly with your history of uterine fibroids. Fibroids generally develop as a result of estrogen dominance (too much circulating estrogen in proportion to progesterone.) I have them too, and ended up having DVTs so extensive they had to be surgically removed, and a PE. Now that you've already had one instance of thrombosis, you've accumulated enough risk factors for clotting that it may be better to stay off the pill.

If you don't intend to have any more children at this stage, have you considered tubal ligation? I went that route and haven't regretted it.

[Buffygb2001 in reply to Jeanie42]

I had a dvt in June last year, did the 3 months course went anaemic due to the amount of

Blood loss I’ve now had a 2nd dvt and back on them and so far been bleeding awfully for 10 days , I feel so weak , I got my 1st one after a flight too

[Jeanie42 in reply to Buffygb2001]

Hi there, definitely see your GP if you haven't already. The side effect was so bad for me that I was severly anaemic (borderline needing a blood transfusion) after just one menstrual cycle. For the rest of the time I was on Rivaroxaban I was on a short course of tranexamic acid and mefenamic acid each time I got my period, and that kept it manageable. But it was a gyne who pushed for that, after consulting with a haemotologist as the two conditions are difficult to manage together. The DVT cleared after 3 months on Riv. Took about 4 months to recover from anaemia though... i was on iron tablets x3 a day. Good luck to you!

[moo196]

Yeah, mine was very bad on warfarin....embarrassing and debilitating.

Glad to be off the warfarin and menopausal!

Good luck ☺

[Jeanie42 in reply to moo196]

Thank you for the support

[Hidden]

I looked at the patient leaflet that comes with Xarelto, and it says that heavy periods are a nasty side effect that should be reported, so if your GP won't help, ring your thrombosis clinic and ask for advice.

[Jeanie42 in reply to Hidden]

Thanks! I actually ended up being hospitalised briefly due to the excessive blood loss, to try and get it under control. I've since been discharged, but they (gynecologist team, in coordination with a haemotologist) put me on tranexamic acid for a few days to try and get the bleeding under control. The bleeding was really very scary and I advise anyone with that kind of severe side effect to monitor it very closely. I called NHS 24 a couple of times, and the second time they sent an ambulance to take me to hospital. I'm still waiting to see if it's going to work properly or not - on the last day of tranexamic acid, and of course still have to take Rivaroxaban / Xarelto.

[Hidden in reply to Jeanie42]

Oh dear, I hope it does work for you! Thankfully, that's not a concern I have - I have long since passed the menopause and don't think I've had a period this century. I hope that you won't have to take Xarelto for longer than the initial three months (I hope I don't, either, but that's beside the point).

[pmd1301]

I was the same and like Alison (comment below) I had a murena cool fitted now I'm lucky that I don't seem to have the usual 5 day period just occasionally spotting but very light. Personally passing clots as big as my hand I would request to be seen by dr, only you know your body go with your own instincts x

[Jeanie42 in reply to pmd1301]

Thanks I called my GP for advice and was told to stick with it. I called NHS 24 two days later when it got worse and was told the same thing by another doctor. Thankfully they did at least tell me the warning signs to look out for, so by the time I called NHS 24 for a second time I was an emergency case. All we can do is be our own advocates and keep pushing for answers until someone takes us seriously! I am currently on Norethisterone, but will consider a merina coil for the future once things have settled down a bit with the DVT.

[Hidden in reply to pmd1301]

Is the occasional spotting normal, I experienced it too.. gynae said could be due to the medication rivoraxabsan. I am into this medication for 3 months already.

[Motty]

I've been on rivoraxoban since March and have not had any problems with my periods . Sounds like I've been lucky reading what some ladies have been through x

[Jeanie42 in reply to Motty]

I'm very glad to know that not all women are affected like this. There is so little information about the side effects of Rivaroxaban and the risks of heavy bleeding (especially for women!) on NHS sources. I have now been diagnosed as quite severely anaemic, borderline requiring a blood transfusion after just one menstrual cycle on Rivaroxaban. Two more to go... it's frightening. I will keep pushing my doctor for answers / possible referral back to a specialist.

[AGMS in reply to Motty]

yes, there is a high percentage of women who get this side effect but you were saved from it! Are you in the 40s? The risk is higher then.

[Motty in reply to AGMS]

I'm in my late 40's but like I said , have had no problems at all on them . Just found out I'll have to take them for ever now due to having a condition called Lupus Anticoagulant , my bloods too thick

[Coumadin08]

I had the same issue when I started Coumadin 8 years ago. I am a lifetime taker of Coumadin. I Had a DVT in the left leg and PE in both lungs with 99% blockage (can we say blessed I am alive). I have a stent and IVC filter placed in the leg, groin and stomach. I was also severe anemic and my cycle was very heavy and LONGGGGG. I had to end up having a hysterectomy. Best of luck to you.

[AGMS]

I can definitely relate to your experience! I am 46 and although my periods were quite light before and sometimes only spotting, now after about 3 weeks on Xarelto I got my period (at that stage, it was 3 weeks late) and 7 days later still got it. The heaviest flow was on the first day and a couple of days later i saw some clots. Although it subsided since, now I can see larger clots forming which worries me since the clots are supposed to be more likely at the start of the period.

From all the reading I've done to understand the possible causes, it appears that heavy periods are more likely to be associated with clots because the anticoagulants might not have enough time to break down the uterus tissue. Another factor is your body position, if you lie down a lot, then blood doesn't flow easily so it accumulates in the uterus and starts clotting. Fibroids and endometriosis can also cause it. So if you are worried (as you rightly seem to be) I would follow up on it with the Doctor and wouldn't stop until they find what it is and how to treat it. This is what I am hoping to achieve too.

[Keithff]

I would stop Apaxaban the day before your period then start it again as soon as finished. Like I have to do with a tooth extraction. It only last 12 hours in your system.

[Daneball]

I had huge bleeding and clotting while on Xarelto and Eliquis. My Dr. told me it was not a concern. It was hugely inconvenient though, there were times I bled through a tampon and a pad in one mad gush and had to leave work. I ended up getting an IUD in and now barely have spotting.

[coconati40]

I have an unprovoked DVT and multiple PE. Was put on xarelto and two days later my period started. It was so heavy and never let up. I was passing clots the size of my fist daily and filling incontinence pads and super plus tampons every 20 mins. So much blood, so dizzy, lack of sleep as had to change pads etc, nausea.

After 12 days of this GP contacted hospital and I went in via ambulance as couldn't walk more than a few metres.

Had very low haemoglobin, was anaemic, put on tranexamic acid and provera to stop bleeding. Switched to pradaxa. 3 blood transfusions, 1 iron transfusion and in hospital for 3 days.

Had mirena inserted in hospital and the last 4 weeks I've been on a decreasing dose of provera each week. Am anticipating getting a period nxt week as provera will be finished so have tranexamic acid just in case. Am hoping benefits of mirena kick in soon so no more heavy periods.

Having that amount of bleeding was traumatic and I'm anxious about period on pradaxa.