Requesting experience and updates from those who have been on Xarelto for APS for 6 months or longer.

[dancer4life]

Hello! I'm new to the group and like many of you found this group during my countless hours of internet research on APS/Hughes Syndrome. To give you a little background I'm an otherwise very healthy, athletic critical care nurse and health nut that had a stroke affecting my right optic nerve 2 weeks after my 36th birthday (last month). My vision restored completely without any intervention 24 hours after the event. It is still unknown whether my stroke was caused by a thrombus or vasospasm from a migraine. The stroke occurred during a period of tremendous stress and I had my first migraine 2 weeks prior. They did all of the lab work for APS and all have come back negative/normal with exception for my ACL IgM which was 28. While I don't meet the criteria for APS and given my lack of long-standing history of migraines my team of doctors are urging me to start anticoagulant therapy. Naturally Coumadin has been offered. Given my line of work and experience with Coumadin in both the neuro and cardiac critical care settings I am extremely resistant to starting Coumadin. My doctors have given me some time to consider as they knew I would be doing my own research and in the meantime I agreed to regular strength aspirin and statin daily (despite my normal cholesterol levels). Fortunately, my team has humored me in ordering every lab and diagnostic test I ask them for to rule out all possibilities. I will be placed on a cardiac event monitor next week. I had a venous doppler study yesterday to rule out DVT and while it came back negative, my tech remarked to me off the record how sluggish my venous blood flow was. She didn't realize the significance of that statement but it was what I needed to hear in order to agree to anticoagualtion. I have been following this group along with a facebook group for about a week and while I have seen a lot of mention of the use of off label Xarelto for APS much of the posts are over a year old without any updates or very recent. Is there anyone that could share your experience on Xarelto that has been on it for six months or longer?

The agreement with my doctors would be to start anticoagulant therapy for 3 months and then recheck my blood work. They are pushing for Coumadin but have agreed to Xarelto if I remain adamantly against it.

Thank you and I'm really relieved to have found this group. I'm an emotional wreck as I'm sure most of you can relate to and understand.

[rach1081985]

hi I take xarelto hav been for over a year .......best thing ever 4 me........ no regular hospital blood tests........ was on warfarin 4 few years bt started 2 become resisant....... im 29 and hav been diagnosed for 7 yrs.

[rach1081985 in reply to rach1081985]

feel free 2 msg me for more info

[dancer4life in reply to rach1081985]

Thank you so much!!! Yes I will msg you

[rach1081985]

k no problem xxxx

[SueLovett]

I have been on Clexane for about 4 years, what about giving it a go initially? I have few side effects except a bit of bruising. Prof. Hughes usually puts patients on it first.

Hope you can get best advise

[wildchild]

I have Lupus and APS and I am coming to the end of the Rivaoxaban study after using Warfarin for many years, self testing and Regular GP visits

and will stay on it because I find it really easy as I no longer have to take bloods, juggle dosing, avoid vit K etc

It is liberating

[Lure2 in reply to wildchild]

Sorry did it again, I put an answer that was meant for you but it landed on dancer4life. Kerstin

[Lure2]

Hi, How very interesting! May I ask who is doing this study?. I guess you are from the US but not sure.

Could it be possible to hear the result of the study please?

I am from Sweden and on Warfarin and selftest every second day. The machine and the strips are free. here.

Thank you for telling us!. Best wishes to you from Kerstin in Stockholm

[salva76]

Hi i am from spain.i have been having xarelto for 1year. And i havent any problem with clots but i have had migrains, fatigue, spams, cramps, muscular pains....but i think it us due to huges syndrome...now in spain my doctor say is forbidden to have xarelto in huges patients and they want to changes to heparine injection.

The only think i dont understand it is that xarelto has not antidotte so in case a emergency if cut yourself it is impossible to stop the blood...otherwise if you have warfarine they give you vitamin k, to stop the action s warfarine.

So is someone who know how really it is true about antidotte for xarelto and new anticoagulations oral.

[dancer4life]

Hello and thank you all for your responses! APSnotFab I am considering everything. It is still unclear what caused my stroke. They still have not ruled out vasospasm and they are only suspicious at this point of APS. That is not enough for me to simply run off to the Coumadin clinic and start therapy. My hesitation with Coumadin is my personal experience as a RN in the critical care setting and the very real consequences of being sub therapeutic as well as over-anticoagulated. If it weren't for the fact that Xarelto has no known antidote at this time, I would be prepared to argue for it. Given my lifestyle and some remote bleeding history in my past, I have not excluded Coumadin as I would require an anticoagulant with an antidote. Either way it's going to be a risk for me and one that I am not taking likely. My doctors sympathize with me, are being both supportive and patient and have all stated "You know too much", which as a blessing and curse is adding to my anxiety further.

[suefessey]

Hi Dancer4life, i have taken Warfrin for over 30 yrs. I have APS, without the Warfrin i wouldn't be here.

[Lure2]

Well said! Thank you APsnotFab.

Kerstin

[Lure2]

It

It is possible to controll the Warfarin. Especially with selftesting of course. If you have not Lupus Anticoagulant (as I have) it may also be easier for you. Fragmin is also said to be a safe drug I have Heard.

Whatever you decide do not wait. Many of us have been too long without enought anticoagulation and it has destroyed inner organ that you can not feel now.

Best wishes from Kerstin in Stockholm

[dancer4life]

Thank you for all of your feedback, I sincerely appreciate it. I don't want to give the impression that Coumadin is the enemy here and that it is not effective in managing APS. I'm just considering whether it is the right option for me. Adding to that, my doctors have been candid in stating that starting an anticoagulant will not be a slam dunk as they still have not come up with a clear cause for my stroke. I am well versed in Coumadin as well over 50% of my patients are on it prior to coming into my unit for Cardiac Surgery and I do the bridging with Heparin to get them back on Coumadin before they leave my unit. But I have seen the good, bad and ugly sides of it. Quite often it has come from difficult to manage INR's in the outpatient setting leading to complications that land them in the ICU. With all due respect, I do not consider Coumadin or any other anticoagulant for that matter a "safe" drug. That goes for aspirin as well. Most of us in the healthcare field would agree that aspirin should never have been made available as an over-the-counter medication. A "safe" medication in my opinion is one that can be taken as prescribed with low risk of serious adverse effects. While anticoagulants are life-saving and absolutely necessary and essential for managing certain conditions (APS in this case) these are medications that require lots of care and in Coumadin's case very close monitoring and lifestyle changes in order to prevent very serious adverse effects. For those of you that are on Coumadin with great outcomes, I am so happy for you. That is a testament to you also doing a fantastic job in both monitoring and adherence to your dose regimen and diet. Coumadin is not for everyone -hence the reason not everyone with APS is being managed with Coumadin. I have seen patients with INR's that were all over the map despite all of their efforts from Coumadin therapy in the outpatient setting come into the ICU with devastating cerebral hemorrhages and GI bleeds. These are not isolated events. Again, I have not excluded the option of Coumadin but as an advocate for my own health I am exploring ALL of my options. That being said, I will be starting anticoagulant therapy Monday. I already understand these medications from a pharmacological standpoint. I joined the group to get feedback from a patient perspective on your experiences and its impact on your life in helping me guide my decision on which anticoagulant to go with. I am so grateful for your openness and time spent discussing this with me and I will keep you posted!