New to Hughes, want to find out more about Apixaban

[TLW68]

Il m new here and on Apixaban for Hughes. Don't know anyone else on this mess! Is there any one out there?

[AnnNY]

I take it with Plavix. I have only good things to say about it. It has made a big difference in my life. But I seem to have microclots, not major clotting. (Also, the other day I posted that I took Ribovaxin, but then I realized I take Apixaban.)

Why, do you say it is a mess? Are you having bleeding or bruising?

[TLW68 in reply to AnnNY]

I wasn't supposed to say mess, it was supposed to say meds! Short for medication. Only noticed that when you pointed it out. 😂 Oops. I have only been taking it for a few months, newly diagnosed at the age of 47 last year. Haven't met anyone else on it and have not had any blood tests since. How do you know you are having micro clots?

[AnnNY in reply to TLW68]

It is my doctor's inference. I had shortness of breath before I started taking it, although they saw nothing on scans. My breathing has been much better since I started taking the new meds, as are my neuro symptoms. So it does appear that blood is flowing through my body without stickiness now.

Regarding side effects, my bruises were darker than normal at first, but now I don't see any signs of too much bleeding. There is a new study on Ribovaxin that was just published and posted here recently. You could look at that study. Both drugs work the same way, although there could be some differences.

[TLW68 in reply to AnnNY]

It is good to hear that you are feeling better. I think there is it to read up on and understand. I will read the article and hope to gain more understanding of it all. Thank you

[Lure2]

Most welcome to this friendly site!

Are you diagnosed by an APS-Specialist in England? I wonder if you are diagnosed by antibodies or only by symptoms?

I live in Sweden and i have primary APS (no other autoimmun illnesses known so far) and also positive to the three antibodies they test for APS; Cardiolipin, Beta2Glycoprotein1 and Lupus Anticoagulant.

I have never tried the oral anticoagulants only Warfarin. I think they are not approved in Sweden for this illness as we need to thin our blood more than usual because of our very thick blood.

Best wishes from Kerstin in Stockholm

[TLW68 in reply to Lure2]

I am in England and have been diagnosed as anti phospholipid positive after stroke like symptoms. I know very little about it all, hence joining this site. I am seeing a specialist in St Thomas hospital London in a couple of weeks so I hope to find out a bit more .

[Tammylola2012]

I am on apixaban right now. 5 mg twice daily. I am LA positive/APS. I prefer apixaban over other anticoagulants. It is working best for me. I have been on Coumadin/warafin and rivaroxaban in the past. I loathed warafin as could never stabilize and dietary restrictions. Rivaroxaban made me feel like I was 84 instead of 44. So many joint/muscle aches. I think my body just could not stand that one time dose of anticoagulants. I have been fine on apixaban. Diagnosed with 3 clots in left leg and 1 in lung in October 2015. I had a hospital scare in February 2016 and found to be clot free in leg/lung. I like eating and drinking what I want when I want it. When on Coumadin had to go once every 2 weeks for blood check and was the youngest one in wait area. Kind of a downer when you are suffering through life altering situation. My hemo said only need annual checkup with him and to consider my APS as my high blood pressure or my diabetes. Basically, apixaban is a statin med for my condition. He said unless other wise for emergencies. My issue right now is pulmonary hypertension. I live in the USA and have no choice to self test so apixaban is doing the job for me.

-Noelle

[TLW68]

Thank you Noelle and pleased to hear it is suiting you. Have you been clot free since being on meds?

[Tammylola2012 in reply to TLW68]

Yes, no issues as far as clots go. I am having todeal with pulmonary hypertension now. This is due to clot damage from first round of catastrophic bilateral pulmonary embolism back in 2011. I was seronegative for about 3 1/2 years. I believe second round of clots in 2015 was due to UTI and being on nitrofuratonin for that, which I found out was a "no,no" when APS positive (this med causes severe flares). However, I found out too late about Nitrofuratonin and clotted again. I hope all goes well for you and apixaban. Any questions I will help to the best of my ability.

[TLW68 in reply to Tammylola2012]

Gosh, it all sounds so scary! Think I have a lot to learn. Hope you get things sorted soon, it sounds like you have been through so much. No one has told me what medications are contra indicated with this or if there at any foods that can make things worse. What about alcohol? Feels like quite a life changer. I am also going through some skin cancer difficulties too at the moment, hopefully caught early, but all very stressful. It's helpful just knowing there are others who are in the same boat! Hope that you continue to get better and better, Tracey

[Tammylola2012 in reply to TLW68]

So glad you are getting your leg checked out. Docs take us very seriuosly when they know we have a history of clots/blood disorders.

There aren't any foods or drinks to be worried about while on apixaban. Coumadin/Warafin is the anticoalugant to be mindful of foods/drinks. Alcohol is strictly in moderation or not at all when anticoalugants are involved.

I have only found 2 meds that counter apixaban that my specialist has told me to avoid. Pepto Bismol and nitrofuratonin, specifically. I do believe some sulfa antibiotics also interfere with apixaban.

Noelle

[TLW68]

I have not really been feeling myself since all this began last year. I have a family history of early stroke and clotting.Through tests I was found to be Anti phospholipid positive, following stroke like symptoms, I also was found to have a small hole in my heart and have more recently had 2 early stage melanomas removed. It's difficult to know with all this going on whether some of my symptoms are psychosomatic, stress, or what. I feel tired, heavy in the legs, get tingling in my face and hands, currently have a large bruise on my calf that I don't recall banging and have recently flown, so feeling worried about it being a clot. It is not warm or red and does look like a bruise but aches and is tender so think I am getting over anxious. It is hard to know how I feel. Overwhelmed certainly! Hope to have a good consultation in 2 weeks. No specialists in my local area.

[Lure2]

Did you feel better when you started Apixaban than the month before. We usually feel much better with our neurological symptoms when anticoagulation is started.

I do not think your are over anxious but of course worried about this new illness which you do not know so much about yet. It is not psychosomatic, do not even think it for a moment!

If I were you I would go to A & E and show the aching calf. Better to be sure so you do not have to worry about it.

Until you meet your Specialist next time I suggest you read "Sticky Blood Explained" by Kay Thackray. She has got APS herself and writes about the different symptoms of this illness and how it is to live with APS. Good also for relatives to understand what we are going through.

Not the latest oral drugs in it as it is written some years ago, BUT most people here like her book and the symptoms are the same today.

Please tell us how it goes for you.

Kerstin in Stockholm

[TLW68]

Thank you, I will take a look at the book and I will ha be my legs checked out if the aching persists. This has all been so helpful, thank you.

[TLW68]

Hi, I have been this morning to A&E. Can't fault the service fantastic care when I mentioned APS. Had bloods done and a thorough examination. Just thought to vbe bruising possible over use of calf muscle , worth getting checked out. Thank you for your help.