Apixoban??: I am about to start new... - Hughes Syndrome A...

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Apixoban??

Kittybaker profile image
16 Replies

I am about to start new medication Apixoban. Coming from riveroxaban and previously fragmin.

Is anyone else on this medication? I am awaiting to see a specialist in a Blood diseases as still feeling tired/joint pain/ pins and needles. I am also on B12 injections for life as my body still doesn't retain it.

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Kittybaker
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16 Replies
MaryF profile image
MaryFAdministrator

I hope it all goes well for you, keep us posted. MaryF

Tammylola2012 profile image
Tammylola2012

I am LA positive and live in US. I am on apixaban (Eliquis) currently. I am clot free and do have occasional joint pain and aches. However not stopping me from daily activity. Risk of bleeding is less with apixaban vs. rivaroxaban. I like that I can eat what I want with apixaban. I loathed restrictions on first round of clots as I was on Coumadin/Warafin.I could not get regulated on Warafin.

I was on rivaroxaban before apixaban and suffered major aches and pains. It felt like I was 84 instead of 44. I would just cry in pain when I would finish a work day.

I wish you the best and hope the new med change works out for you. If you have any questions, just ask, I will be happy to help to the best of my ability.

Kittybaker profile image
Kittybaker in reply toTammylola2012

Thank you:) The symptoms you describe sound exactly like mine. I wake up every morning with extreme pain and pins and needles. Blurred vision. Joint pain.

I have been referred to other specialists who have checked nerve damage/carpal tunnel. All tests came back clear. It has just been put down to Aps. I am hoping the new medication will alleviate the symptoms

Tammylola2012 profile image
Tammylola2012 in reply toKittybaker

I hope you get better results with apixaban. It is hard to find new normal when you feel like you are stuck between a rock and a hard place. They need to find med that will thin our blood properly and try to lead a close to pain free life as possible from symptoms of this blood disorder. Let me know how you get along and I will, hopefully, be awaiting good news on your behalf. 😊

jordanibanani profile image
jordanibanani

I have an APS specialist here in Denver and her favorite combo is Apixaban with Plavix. I have tried the Apixaban twice and hemorrhaged both times. I am on Arixtra (once a day injection) and Plavix, Plaquenil, and IVIG. I've been on the IVIG for 3 months and I've had pretty decent success so far with my autonomic neuropathy. Also a decrease in migraines and shoulder pain. Still a work in progress, but I don't feel like death everyday, except right after IVIG. I had it yesterday and feel like I have the flu. Give me a couple more days and I'll be back to my "normal".

tobiasm profile image
tobiasm

I've been on Eliquis and have been about a year with no issues . There are studies currently going on with apixiban and rivaroxiban that they are supposed to discuss findings of at the International Congress for Antiphosphilipid Antibodies in September

EbonyJewel1224 profile image
EbonyJewel1224 in reply totobiasm

That's nice to know that some studies are atlast underway. It is not a good feeling to know that this class of drugs are acceptable choices for all other conditions in which Warfarin was once the drug of choice except APS. I take Warfarin complete with all of its warts including dietary issues, weekly testing and drug titration. I will tolerate these minor issues given the knowledge that currently it is the only drug currently tested approved for the treatment of APS. I was feeling bad that our choices are so limited especially in the face of what I perceived as a lack of urgency to increase our treatment choices.

Wittycjt profile image
Wittycjt in reply totobiasm

Where can I find this study info? thanks🌸

Wittycjt profile image
Wittycjt in reply totobiasm

Hee ha.. Can't wait👍🏻

Kittybaker profile image
Kittybaker

I have a very good specialist. My consultant is Dr Sarah Lewis at Neville Hall.

I have had a very shaky road with my Hughes. My body is allergic to warfarin so the first clot I developed, my INR range was correct and my blood thin but my clot carried on getting larger and in the end went from my knee to under my lung. I collapsed and was in intensive care for 11 days as they had to remove my clot. The damage caused by the clot left me having my left side stented as my veins were rather battered. I have always been on fragmin injections and for the past year riveroxaban. I suffer very badly though with pins and needles and pain so the new drug has just been prescribed to me, I had a few other side effects from riveroxaban so this new one is the next stage:)

Kittybaker profile image
Kittybaker

Thank you:)

Wittycjt profile image
Wittycjt

I understand it isn't released yet but would like info on how they are researching it..what they are doing to test it. Thanks

Kittybaker profile image
Kittybaker

Just an update. I suffered very bad side effects on Apixoban. Breathing difficulties, bleeding, complete loss of energy, 5 days later I went back to riveroxaban

Wittycjt profile image
Wittycjt in reply toKittybaker

And now what's happening?

Kittybaker profile image
Kittybaker in reply toWittycjt

Just staying on riveroxaban

Wittycjt profile image
Wittycjt

Good for you and how's that working out?

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