New member - Xarelto anticoagulant

[Fire_fly]

Hi! I was diagnosed with APS after a pulmonary embolism about a year ago and taking the newer anticoagulant Xarelto. Anyone out there on the same meds? Just wondering how they are doing?

[merrohawk83]

Hi there, yep - I'm taking Xarelto too. I had PE in August last year and was on Warfarin for 6 months until March this year when I was diagnosed. I then switched to Xarelto as I will obvs now be on it for life. I don't think I've had any issues so far! How about you?

[Ozchick]

Me too, as well as Aspirin. No problems so far

[Rob79]

Hi, I had a DVT about 2 and a half years ago I was then shortly after diagnosed with APS, I was put on warfarin but changed over to Xarelto within a year. It's been 18 months for me and so far no problems, I have a check up with the hospital every 6 months and my GP also monitors me with blood tests every 6 months. Hope it all goes well for you.

[Fire_fly in reply to Rob79]

Hi Rob! Thanks for sharing your story. What type of blood tests does your GP

[Fire_fly in reply to Fire_fly]

.....does your GP request.

[richardtvaughan]

Hi,

I suffered massive bilateral PEs February last year (2014) and have been on Rivaroxaban (the generic name for Xarelto) since then. I have been taking it for over a year and have had no problems with it.

[Fire_fly]

Hi thank you for your replies! Overall everything seems good for me too! I get these really bad muscle spasms in my legs once in a while after I have been active and was wondering if it has anything to do with the medication. Do any of you play sports like hockey or downhill ski? I decided to stop since I started taking Xarelto because of the risk of bleeding and lack of anti reversal agent. Again just curious to see what others are doing.

[beccafullcircle]

Hello to all

I am curious about this medication because my oncologist said they placed one other person with APS on this med and it was not a good thing. I never felt peace taking the new medication and now have been told it is not a suggested medication for this specific blood disease. Is there more research done that I do not know of? Also is everyone that has commented above in the USA or where are you all living so to track what country is prescribing? The reason I ask is London seems to be the leader in this disease and would like to know what the Hughes Foundation typically prescribes is it mostly all Warfarin or is the Xalerto something that is given out in London?

I wish you all a blessed day and much healing for all the difficulties you all may be having. Thanks for the communication

Becca

[MaryF Administrator]

I am not on this drug so can't personally comment but there were trials done with this drug, at Guys & St Thomas' Hospital Trust and also UCL. Also there was discussion about it at the Hughes Syndrome Patient's Day, and soon the film will be available for us all to watch. MaryF

[beccafullcircle in reply to MaryF]

Thank you Mary, will be good to see the film if it comes available

[Lure2 in reply to MaryF]

Thank you Mary! That will be much appreciated from here.

Kerstin

[Firefoxie007]

Hi all,

I'm a sufferer of APS & had plenty of my fair share of DVTS PE's, plus every single syndrome there is for APS. I'm now going through Thrombosiselorosis (sorry about the spelling). With many other medical problems, including TIA's, the doctors have put me on this new Anticoagulate. What I'm worried about, I read the info in the packet of the tabs, & it does not mention about the dosage they put me on. I'm taking 15mg twice a day (12hly), is this safe? Before this, I was on 10.000units twice a day (12hrly), for 10mths, (my hair is falling out because of this), I read it should not be more than 6mths.

I'm Feeling like a giggey pig. I've had APS for around 10yrs, they did say I was rather young to have these problems. (I'm not that young believe me), but I'm just in a turmoil, esp with all my other problems.

Please help!!

Tina

[Firefoxie007 in reply to Firefoxie007]

Sorry, I ment to say, 10,000units of Fragmin 12hrly.

Tina

[terah1964]

I was on Asprin 650 mg every day for years to control what they didn't know was APS. after multiple Bilateral PE, basically out of now where, I was put on xarelto. During the following 6 months, I had another round of PE's, sezuires, and a general worsening of the Neurological symptoms of APS.

Xarelto is not studied for APS and it didn't stop me from clotting, in fact I believe made me much worse.

[Lure2 in reply to terah1964]

I hope you have found an APS-doctor in your country now, who knows APS and knows what to look for regarding this illness. Hope he has also given you a better anticoagulation drug. We have too thick blood that has to be thinned.

Before I was on Warfarin, which is my anticoagulation drug since 4 years, I had Aspirin 75 mg and later on they tried with 160 mg (double doze) which did not work better only gave me stomach-trouble.

650 mg Aspirin is very much.

Hope everything is ok now. Stay on here.

Kerstin in Stockholm

[terah1964 in reply to Lure2]

Hi Kerstin,

I am currently on 150cc of Lovenox twice daily and will be for life it seems. I can't take coumadin as I do not get theraputic on it until top dosages then my hair falls out and I don't respond well to it. I just know that the xarelto is a risky new drug that caused me a ton of problems. I am better now on the injections, but still having so many neuro problems that I have had to start using a wheelchair and had to give up driving, the Doctors all agree I have APS, and Sjogrens, But can't figure out the neuro part.. which after research, I believe is APS/Sjogren at play.

anyway,, Thank you for your favor of a response, and I am a lurker, I am on here all the time, just not much to add other than my fustration over this non diagnosis.

Take care

T.

[Lure2 in reply to terah1964]

The Admins on here ( also Prof Hughes) always talk of Thyroid, APS, Lupus, Sjögrens.

Autoimmun illnesses connected in some way. Important to check T3 And T4 regarding Thyroid. B-vitamins and Ferritin (Iron), Calcium and D-vitamin.

As you are a "lurker" you have probably read that some members here that are tested for MS that do not have MS but APS. On the contrary have they spoken of MS with you. The first Neurologist I saw after my TIA was a Specialist of MS here in Stockholm.

My neighbour (40 years old) has MS. They tested her for APS but it was not.

Hope you have the right doctors because that is the main thing. Hope you live in a country where they accept sero-negative APS as a diagnose. You can also have Sjögrens syndrome without having the antibodies for it.

Kerstin

[terah1964 in reply to Lure2]

I feel like we have hijacked this thread.. lol.... I have all the tests, and incidents (DVT, PE, TIA miscarriage) proving APS and Sjogrens. all my blood work is wonky, but the things you mentioned are always checked and good, well except the iron, I recently got an iron infusion, usually get one a year as my iron falls really low for no reason. My problem is getting a diagnosis of neurological APS and a Dr. who is more knowledgeable of the Neurological aspects of the disease, especially with a concurrent or multiple autoimmune diagnoses

[Twin59]

I haven't been officially diagnosed with A PS because I have to retest and have another positive result. I've had two PEs one year apart. Was put on Xarelto after first one. Went off in 6 months. After PE recurred one year later was tested for APS. 2 out of 3 blood tests for it came back positive. Dr. switched me from Xarelto to Warfarin because he just attended an APS conference at Mayo which said Warfarin was better for APS. . .less chance of stroke. He suggested this even though I didn't have a confirmed diagnosis of APS.