Hey guys! I was diagnosed with APS in 2014 when a 10 inch blood clot was found in my left arm and had grown to the point that it was literally 3 inches from my heart. Had I waited another day to seek help, I would have died leaving behind an 11 year old son. Thank God I knew that something just wasn't quite right and made a point to get to the doctor. For many years including my childhood years, lab work revealed some type of autoimmune disorder but despite seeing many doctors, it wasn't until 2014 that anyone could tell me what was going on. I know now that my 2 miscarriages before my son and one after were caused by APS and that a PE in the lung and multiple DVT's are due to the syndrome. I was told I would be on blood thinners for life and was taking Xarelto until it caused bleeding in my stomach. I now take Eloquis twice a day. One of the issues I currently have is finding a dentist that is comfortable working on my teeth due to the risk of bleeding during any dental procedure, even cleaning! Has anyone else experienced the same situation? Thanks for allowing me to share and thanks for any feedback about the dental issue!
Issues with dental care? : Hey guys! I... - Hughes Syndrome A...
Issues with dental care?
Hi,
I see you live in the US and I wonder if the Doctor who finally diagnosed you was specialized in Hughes Syndrome as that is very important.
I also doubt that the oral anticoagulation drug Eloquis is enough and that you instead need a bloodthinner like Warfarin with a higher INR to prevent further damage as to lung, heart etc. You also had DVTs and PEs.
I am on Warfarin and when I do a normal procedure every year at the dentist he has never seen any bleeding from me even as I had a rather high INR once. We have too thick blood and do not usually bleed (know you did on Xarelto, do not know why though) from it but clot.
This is all I can tell you I am afraid as I have done no big issues at the dentist.
Best wishes from Kerstin in Stockholm
Yes, Kersten. Welcome to the world of APS in the United States. Can you believe Danas past history and she only on oral new generation Xa s?
Dana! Where did you go, sweet Lady? You landed on a forum that very well may save your life. I strongly encourage you to look up the RAPS trial in the Lancet journal of hematology. ( hematologists doctors / professors Beverly Hunt and Hannah Cohen were two to name a few.) Please show it to your doctor. It is the APS guidelines that you be on Coumadin, with an INR of about 3 at least I should think , but of course that's for your doctors to determine.
I have had health issues my entire life and when I tried to explain symptoms to my doctor, they would write it off as depression. I actually became depressed not having doctors listen and work together to figure out what autoimmune illness was wreaking havoc on my immune system and I still am experiencing that now. I lost my first pregnancy at 13 weeks due to APS although I was not told that was the cause. The baby had no heartbeat when I went to the doctor so I was given an abortion. My second pregnancy was lost at 10 weeks and my only successful pregnancy which was my son, I almost lost him at 8 weeks because my immune system began to attack him in the womb, I was on bed rest at 5 months during my pregnancy but kept moving because sitting still kept sending me into preterm labor. All the while, I was never tested nor told I had APS. I had a hysterectomy in 2015 at 34 years old because I was told I would never carry a child full term again. That crushed me. I have literally quit jobs because I didn't have the energy to work them or worse, had to quit because some unknown illness put me in the hospital. My lungs collapse at the drop of a hat, any surgery I've ever had has caused me to flatline or nearly flatline.. During my surgery to have my wisdom teeth extracted, my pulse dropped to 12 beats per minute.. I'm not a lazy person So much so that I decided I would heal myself and quit taking all the meds that had been prescribed to me. Maybe that was crazy but when I stopped taking all the narcotics, antidepressants, and antipsychotic meds that were prescribed to me by the doctors that were unwilling to listen to the symptoms I was having, I began to feel better and have been without them for 8 months. I quit taking my Xarelto because it caused my stomach to bleed and just recently have been prescribed Eloquis by a cardiologist that said I needed to be on something. I'm waiting on a hematology referral but my GP felt I didn't need one since the cardiologist deals with the heart and wrote a prescription for Eloquis even though he said I needed a hematologist on speed dial.. My ankles and feet swell, go numb, and turn blue on a daily basis. So do my hands, scalp, and lips. My optometrist says my decline in vision in the past two years is alarming and worries that some underlying rheumatological cause is playing a part in it all. My dentist of course is scared to do anything despite my gums being inflamed and bleeding daily, and needing 4 teeth extracted, and my neurologist says that I have to take my adderal 20 mg twice a day in order to keep a driver's license because going into REM state after 3 minutes of shutting my eyes is rather dangerous.. I stay tired everyday. Household chores is the equivalent of climbing a mountain. Sometimes I have to give myself a pep talk just to gather the energy to get out of the car and carry the groceries in the house because my legs from the knee down go completely limp and tingly like they're falling asleep. I also have skin issues and have since childhood. I sweat blue perspiration believe it or not and am allergic to my own sweat along with most NSAID's latex, detergents, fragrances, lotions,etc.! Everyday I learn I've become allergic to something new that I wasn't allergic to previously.. It's not depression. Trust me! I lost my home in November of last year due to flooding from Hurricane Matthew. My son and I moved to another state to live with a friend when we had nowhere else to go and stayed for a month, moved back to our home state and have lived in and out of hotels and with friends while I've tried to get us back on our feet. It's been a tough road but I'm still pushing hoping that one day, someone somewhere will figure out what is going on with my body so that I can work a full time job again and have some resemblance of a normal life! Thanks for listening!
Blue sweat! Well that's a first!
Vision issues are extremely common with APS. I am extremely baffled why you are not being managed more proactively considering you have already been positively diagnosed with APS. It is impearative you follow through with your GP, and hematologist immediately and begin Coumadin. It is the only approved medication for severe APS to date- ( please reference the RAPS results in case I am mistaken. Check USA protocol with your hematologist.) my INR needs to be above three so it's Coumadin for me. Often APS is in tandem with other auto immune illnesses which may explain your sensitivities. A thorough work up with a rheumatologist would be advisable. Look up auto immune optic neuropathy. ( vision issues.)
I'm so sorry about your pregnancy losses- an all too common tragedy with APS. I've lost 5, pretty early on. Fortunately we were able to have two- but not easily. Took a lot of trying and patience. 10 years apart! We could never figure out why- we even had genetic counseling and the underlying problem was missed. I even told them my mother had pre eclampsia and clotted. It took many surgeries- years- for me and getting increasingly more ill to figure this out. ( only 4 months ago actually. I'm 48 now. )
Im sure your not depressed. But now you know what needs to be done- so go get this done with the hematologist! Get your life back👍😊
Thank you for the advice and encouragement! It means a lot. Chromohidrosis is the medical term my dermatologist gave for the blue sweat.. Thank you again for all your help on APS.. My prior GP seemed to act as if it weren't a big deal until the specialist that tested and diagnosed me with APS said otherwise. It's good to know, I'm not alone and that you understand firsthand the effects of APS.
We all do here! I've had such a fast learning curve- I'm still learning all the time.
The administrators ( APS patients themselves) are fantastic and have archives of medical articles for us on the ready. Other forum members pitch in with questions many of us also have, and we try to chime in if we can be useful. It seems we share many things in common, but many things are unique to us also, depending upon which systems are affected, and which other auto immune diseases may or may not accompany the APS. So- go forth and prosper!
I have literally just come from having a clean at the dentist. I'm on Xarelto and the only time I have to stop it is for extractions. Fillings etc. are fine and have had no probs up to now. My dentist is aware of all my health problems and he doesn't see a problem with any work.
No problems when I was on warfarin or Clexane either.
Is it absolutely crucial that you have a specialist who understands Hughes Syndrome/APS fully, so that they can advice any dentist who is needing to work on your teeth. For instance when people are on Warfarin/Comoudin, if needing some sort of surgery, then a bridging plan is worked out with the surgical team, but I am sure wroking on our teeth for routine procedures will be ok, other members will tell you about dentists they use if you can say where you are located. MaryF
Heart Attack at 38
Diagnosis of Hughes no longer relevant
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