Hey, I'm pretty new to all this. I had a large PE 6 years ago thought to be attributed to birth control, was told all genetic testing after was fine. Hematology didn't want to do precautionary asprin daily after released from care. Fast forward 3 years ago, I had another (very small) blood clot, this time it went to my heart and had to have an angio w/stint and was on Brilinta for a few years. Genetic testing now says I have APS but possibly not lupus. History of Hashimotos, Me/CFS, IBD, Fibromyalgia though. They deemed Warfarin wasn't suitable for me due to the interaction with several key meds I'm on. Have prescribed daily Lovenox injections. I'm having a terrible time finding a lot of literature about this or any support groups, but the last few months have been pretty anxiety riddled and scary. Would love some advice from fellow sufferers. Because injections daily with a slight needle phobia isn't helping.
New to the APS game: Hey, I'm pretty... - Hughes Syndrome A...
New to the APS game
Hi and welcome. Sorry to hear about your previous issues but sounds like you are now getting good care.
I also have pretty much the same as you plus Sjogrens and can’t have warfarin and inject Fragmin twice daily and have been doing so for 14 years! You do get used to it and it becomes just part of life. I find doing it in bed before going to sleep a good time as it helps cut down on any bruises as your relaxed. If your just once a day you might think about that.
Also not having to have warfarin means your free to eat what you like and you don’t have to worry about other interactions, except don’t take ibuprofen!
As time goes by you will find you will lead a pretty normal life. Of course we have to deal with the other conditions too but you will find you will stop worrying so much about the APS.
Thanks for the suggestions. I've been trying to give my night shots reclined and relaxed, so far they aren't all terrible
Hi and welcome, any new diagnoses is scary, it's only natural, many of us have very unique treatments to manage APS.Myself, I can't take warfarin and have been on clexane for over 20 years now - I have learnt to listen to my body and on the whole manage my APS (and other health issues).
You sound like your specialists understand and getting you on Lovenox hopefully will be the key to you having more confidence in not getting any more blood clots. Sometimes at this stage it can be a bit trial and error to what suits you but keep with it. You may also find it helps with your other autoimmune symptoms too.
Again welcome x
I was diagnosed with APS in 2001 after a series of scary mini strokes! I too was concerned with how this " you'll never get over it" diagnosis was going to burden my life. Except it hasn't! Yes, I take warfarin daily which means I must be consistent with the amount of VitaminK I eat daily, and yes, there are those blood tests every few weeks, But all these have becone routine! And I certainly don't miss how I felt before my diagnosis and treatment! ( Those mini strokes were scary!) I took lovanox injections when I bridged off and then on again from warfarin due to surgeries, ( which went well.) And I must say ; I relished the liver and onions I was able to eat whike on lovanox since that injectible does mot require Vitamin K in diet monitoring! Welcome to our group where we all share our hopes, fears and tips on how to live and cope with our shared " you'll never get over it" diagnosis.
I am allergic to warfarin and was put on acenocoumarol and only have to inject if my INR goes below 3. I wonder if this might be suitable for you? I also self monitor and have done so for the last 15 years. I am under St Thomas's and have a lot of confidence in them.
Thanks for the suggestion. I did a little research and it looks like acenocoumarol isn't available in the USA so I don't think I could get on something like that. It would be nice though to only do a shot if my INR was a certain range
i have been on lovanex every twelve hours as i have had several strokes, open heart surgery, etc. Tips: make sure you rotate sites. I even use my inner thighs now- i know that seems painful but it isnt too bad if you inject the needle slowly into your skin you will hardly feel it, then slowly inject the solution. Lovanox can affect your bone density so make sure you have routine dexascans and exercise daily even if it is just a walk. Make sure you keep hydrated with water as it helps with thinning your blood’s viscosity. Make sure you protect yourself from head injuries- wear bike helmet when bike riding, dont do dangerous things that could cause you harm/ traumatic injuries- i dont advise zip lining. If you develop lumps from the skin injections, try to avoid the area for next injection until it subsides. With lovanox you can eat what you like but you have to keep your weight pretty constant to the dosage. I found that easier than trying to avoid vit k. Please feel free to message me if i can help you further. Good wishes, it will be okay. I remember being very frightful but am definitely at more peace now… it takes time but it will come.
Thanks for the kind words. I'm trying to be okay with everything but it's been very hard
Hi Zombiegirl!
I am still smiling about the MD who was just online and introduced himself by his specialty and also the fact that he married “a vampire”, (meaning one of us) And “the vampire”was an MD also as were their very best friends. No one could figure how to successfully lessen the vampire MD’s pain or flares.
I had to self inject for several years and it was not a fun experience Also pe’s no family medical history and more / I assume relinquished bc of the above
But what the Doctor wed to the vampire had to say was the journey was just like we all experience Even as a professional seeing and experiencing what he has — It is unbelievable!
He finally found some approaches that have actually worked And things are actually better than they were before .
We are all so different but maybe the same in that we all would vote not to be here . We can only share what we have tried and worked or not .
Welcome ! And be encouraged !
Everyone here is in the same boat - speed bumps everywhere I have had to figure out a lot on my own . Maybe the MD’s who prescribed the other medications contrary to warfarin could come up with some other combination that would work for you? That you might be happier with ?
💐
Thanks for the suggestion. Warfarin has a major counterindication with thyroid medicine and I have a non-existent thyroid count without meds, due to the Hashimotos. So it was on that recommendation alone that they ruled out Warfarin. I did have a lengthy discussion with my doctor yesterday as I developed some serious side effects with the lovenox injections so we are switching gears and going to try a non-standard for APS oral anticoagulant along with asprin and hope it manages any issues. So fingers crossed
New to APS and terrifie.
negative aps long term treatment
Seronegative APS?
APS Plus another autoimmune disorder! Plaquinil???
