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Sticky Blood-Hughes Syndrome Support
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Info I got on Xarelto

My Hemotologist told me they're doing studies and we may be able to use Xarelto as blood thinner! Not for advanced people like me, because I had Arterial Clots and lost my leg! But for those of u maybe that's good news! I hope so! I'll update u on my APS! My Hemotologist felt bad about not diagnosing me sooner so he repeated APS test without telling me! When he got them back he said I was hoping u didn't have APS so I ran ur tests again and they're still very hi! You definitely have it! Yes I know I said ! Lol... I also have RA and Sjogrens which now is kicking in big time!!! I had a tooth pulled, on side where a wisdom tooth years ago broke my jaw and lead to 6 operations to correct my face! Leaving me with no feeling on one side of my face and lip! I have constant burning tongue and since my tooth pulled I've a month ago ,. I now have self diagnosed Neuralgia! My face and lip are in severe pain and I drool during day during waking hours and have sores on my lips from drooling! It's highly embarrassing and very uncomfortable! Least to say excruciating nerve pain that nothing helps! I'll call Dentist tomorrow and she'll tell me to see a Neurologist and I probably won't go to useless Neurobdoc that certainly don't get it!!! Lol... I know what to do without the Neuro! Heat helps a lot! Moist heat! Anything else too invasive for me! My hubby has 2 weeks left of chemotherapy and radiation! He sleeps all day everyday! But that came with the Alzheimer's! He's progressed with the Alzheimer's since 2 surgeries and heart attack on March 22! I love to read all ur posts! Not so fav just cracks me up!!! Love u Lynn!!! You all are so very smart with all the scientific thins u say and u make me understand it! I totally understand things but can't put it into words as you gals do!!! I'm amazed at Y'all!!! Hello Texas I think Kelly from Texas! I'm from Long Island, New York!!!

12 Replies

I forgot who is your hematologist? Did they say where the new study was being done?


Sorry I didn't ask! I will next appointment! How r u my dear doing?


Good, I think. You know how it goes you can think youre doing fine then something sneaks up and bites your tush. Lol. Sounds like you are in better spirits are you getting more rest?

1 like

I'm sorry you're going through so much! I hope you can get the help you need to relieve the pain.


Keep on keep'n on.


I am sorry for all you are going through. What a rough road but you seem to have a Positive attitude which is important. Great that you found this site for the support! I wish you the best!

I was originally put on Xarelto at the hospital after I was diagnosed with my DVT but my hematologist recommended I switch to Pradaxa as (per him) it has a counter active agent which he stated Xarelto does not. He did ultimately diagnosis me with APS after 2 blood tests. I was wondering about the use of Xarelto and Pradaxa since I noticed most people on the site are on Warafin or aspirin. I also read something the other day that Pradaxa still was still under study for people with APS. I know warafin has dietary restrictions which Pradaxa does not. So I do prefer that aspect of Pradaxa.

Learning more and more everyday!



Hey Debbweb01, I also had facial neuralgia. The neuralgia I had was caused by micro clotting in jawbone which, in turn, prevented adequate blood flow which caused bone cells to swell and press on nerve running through jawbone. After 8 years found only treatment that worked was Coumadin which thinned blood enough to correct jawbone ischemia. I had to get my INR above 2.5 for about 3 months before neuralgia disappeared.

I also have burning tongue problem. Do these things run together? I tried antidepressants which seem to help some people but didn't help me. Also some have luck with neurontin which interrupts nerve signals but it didn't help me. I am now taking an antiviral, acyclovir, which helps tongue problem tho I'm not sure why it does. You are right about nerve pain, there is no pain reliever that touches it. You say moist heat helps you. For me, prior to Coumadin, I used ice bag or I sucked on ice cubes. That seemed to help me. We are all different , and yet in some ways, the same.

Good luck from West Virginia



Hi Ondstephens49,

Just a thought of mine; have you ever tried to keep an INR a bit higher than 2.5 for some time? I also wonder it you have got diagnosed with Sjögrens?

I have not read your previous info.

Best wishes from Kerstin in Stockholm


Yes I use ice too, I change off half an hour ice and half an hour heat! If I rub my face that seems to help too! Only while rubbing it tho! I wish u the best! The mouth sores don't heal cuz of the constant drooling! Therefore I'm always raw and sore! I can't take neurontin! Don't agree with me! I'm very sensitive to many meds! A ton of allergies to many meds! It's a challenge to wake up everyday like this, especially the dreaded Mondays, but I keep on truckin!!!! Your response has helped me enormously!!! Thx so much!!! GODSPEED!!!


Maybe put some plain Vaseline on your sore lips? It may soothe from the irritation


Hope you feel better soon with all these tips. Yes, I have APS and have been on Xarelto for over 12 months now.


Howdy, howdy!


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