This is my third post in this group and I’m hoping to get some positive testimonials from long term APS patients.
I’m 38, my partial diagnosis started a month ago when I was hospitalized with bilateral PEs. My first round of tested showed triple positive. Unsure what that means still. Went home from hospital after a week of being treated with heparin and eliquis with an INR of 1.4.
I continued eliquis for a month before my Pulmonologist moved me to warfarin. I was on warfarin for 3 days when I was back in the hospital with a few new PEs. Although these new PEs weren’t straining my breathing or my heart, I still feel like they’re such a huge set back.
I know this post sounds like a repeat of my last but I’m just having a bad day, I guess. I don’t know who to vent to or ask for help. I don’t have people who can reassure me that my life will still be worth living with this disease. I have 3 babies, 2 of them are 11 and 4. Will they have to watch their mom die? Am I going to be a burden always in and out of the hospital.
I’m just having a really really bad day
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Vmarti
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Im really sorry you are having a bad day and that you are having these feelings which I must add is only natural. You have had a really bad shock and now every single twinge makes you worry that you are going to have a set back - we have all been through that so stop beating yourself up. And by the way this is the safe space for you to come and have a moan because we have all done it.
I know it does not seem so at the moment but things will settle down. You will learn how to cope with this condition as we all have done. Its important to have a medical team around you that you trust too which will give you confidence in what they tell you.
By the way, being triple positive just means you have tested positive to all three of the APS antibodies that's all.
Have you heard of Dr Jason Knight Michigan Medicine APS Program - he has a very good web sight and sends out a newsletter every month that you can sign up to.
I think over time you will become more stable with this, you have a great consultant who knows what to do, we have all felt like you at one stage or another, I had lots of clots during my first pregnancy which were very worrying at the time as I was only 23. Do make sure your Thyroid and B12 levels are kept an eye on, alongside D, Folate etc, as if any of those are out of kilter it can make you worse. It is worse not to have a diagnosis than to have one, many on here have struggled for years to get diagnosed, it is safer that you have a diagnosis and you are medicated, however you need time to come to terms with it, do ask you GP if there is any counselling around you can access if you feel very bad. Best wishes to you. MaryF
As I said to you earlier you must get a Specialist and an INR that will keep steady at a rather high level (APS-sufferers triple positive have mostly more problems with an unstable INR).
If you also have high titers of the antibodies there is also a bigger possibility to get a new embolie or clot. I am triple positive with also high titres all the time. It took some time before I got my diagnose. It is very good you have got a diagnose so quick! Now you have to find a Specialist for your APS !!
If you get your blood stable you will feel much better. We all have had to "fight hard" to get to a Specialist. Read "Sticky Blood Explained" by Kay Thackray. I have said this many times earlier and I hope you have that book still in the USA etc. I live in Sweden and I have actually 8 books written in English from prof Graham Hughes and Kay Thackray. As the Doctors know so little of this very rare illness we have to educate ourselves about our illness.
I have today 3 Specialists at my hospital who have known me for around 12 years. I am very interested in this illness and I now know that a correct thinning of our thick blood is the most important medicine for APS. Prof Hughes often has said; "we do not bleed from this illness, but clot".
Remember it is only the blood tested in the vein that is correct, especially for us with triple positive APS (there may be a bigger difference for us). It took me several years before I learnt this difference (vein/finger prick) and how important it was to be at the correct INR. We can feel the symptoms if the blood is not thinned enough, but the result in the organs will come several years later. That is why it is so important to get the blood correct thinned as fast as possible.
I’m just not understanding how the doctors will know what a good INR will be for me. Right now they want me between 2.5 and 3. I don’t experience any other symptoms like the fatigue and brain fog. I never felt leg pain to suggest I had DVTs. The only reason I went to the ER where I was eventually partially diagnosed, and I say partially because I have yet to do the second round of testing after 12 weeks, is because I was very short of breath. I told my doctors other than the shortness of breath I always felt very healthy. I’m having a hard time finding a specialist in south Texas and even if I did I don’t believe I am financially capable to see one. I do have insurance but having almost 2 weeks in the hospital my medical bills are already piling up. It’s just all very stressful. And my pulmonologist doesn’t give me very much hope. He makes it sound like I have to choose between clotting and dying on a low INR or bleeding out and dying on a high INR. Both sound terrifying.
Hiya, the 2.5 to 3.0 is a quite normal initial target and gives them something to work with. What your pulmonologist says is similar to my own thrombo consultant, although she seems to have a bit more softly than your guy.
My understanding is that there is a balance of risk, and that this takes time to establish, but the extremities of sever clotting or severe bleeds are very unlikely, it’s like the absolute worse case scenarios and you’d have to actually make quite an effort to get to either of those situations. Eg by not testing and monitoring for long periods, not taking enough / taking too many meds, not testing if on additional meds (eg even just simple antibiotics) or for not being consistent with everything, or by going out binge drinking etc. Even then you’d have to be getting it spectacularly wrong, it’s not like there’s simply zero safety margin.
It is definitely a slow burn, I’ve been on warfarin for a year, was doing really well and staying steady for over 6 months after a long time getting a dose that worked, but now getting fluctuating high and low readings, so back to a weekly testing regime and trying to work out a steady dosage again.
It’s quite frustrating, but after getting stressed and fixated about trying to keep precisely on my 2.5 mid range target, the consultant eventually called me and properly explained that the 2.0-3.0 is the target range, and that if it dropped occasionally to around 1.7 or went up to 3.5 then really no need to panic (which I used to do), and that the clinic would dose accordingly and I’d have to test more frequently for a while.
I was originally told that I’d be able to get my test interval pushed out to 10-12 week…hmmm…I’ve since learned that this is soooo unlikely, as APS patients are super sensitive to changes.
Now I’ve got my head around this I’m way calmer and happier and the testing is far more of my weekly / bi-weekly routine, and I’m far better with staying consistent and being super conscious of how I feel.
Personally I don’t think I’d ever actually want to push my tests out to more than 4 weeks, certainly not for a while yet, and until I’m totally convinced that it’s safe to do so.
It’s good to have these feelings of uncertainty, it shows you care and that you want to get things right. Can’t ask for more than that and maintaining that dialogue with the docs will be critical to help get your personal INR range understood, and help you feel much happier about it all.
I thought you had got a diagnose of APS. If you have not got the second test within a 12 weeks time positive, you are not got a complete diagnose of APS as to the antibodies.
Usually triple positive APS (positive twice) need a higher INR than those with only one or two of the other antibodies. I guess you have to wait for a second test of the 3 antibodies to know you have got APS and not something else.
I asked my pulmonologist about the second round of testing because he seems to be 100 percent positive that this is what I have. He assured me we still need to do the second round of testing.
Lots of support here though, never hesitate to post and ask questions, the shared experience and education I’ve gained has been tremendous. We’re all in it together 😊
On the massive positive side, you have a diagnosis and the docs can now treat you properly. Do try and bring this to mind, as yes it’s a rare condition, but it is very treatable and once under control you can have a full and normal life (except for constantly making sure you’re eating a consistent diet with a steady vitamin K intake!)
The downside is that it just doesn’t happen quickly. There are lots of tests, lots of checks, and there’s no ‘one size fits all’ solution.
For us it’s warfarin (and possibly a high dose of statin to keep the blood vessels in good condition?), and as I’m sure you’re learning this isn’t just a case of popping a couple of pills, as the variables in life make it a constant balancing act.
Your INR is very personal to you, others might be on 4.5 target, I’m on 2.5, you will have your own range that the docs will work towards.
But again, it does take time. Tests, dosage adjustment, tests, dosage adjustment and repeat and repeat. And then keep repeating.
As others have said, lots of things can have an impact. Other meds, weight, antibiotics, diet, exercise, alcohol, illness. So if these things change then you do have to get retested to make sure your INR not gone out of range (low or high).
So, it really is a journey, but one I’ve found better to really take part in, learn about and focus on. Probably my way of handling it, but it can be quite good fun in its own way.
Keep talking, keep asking, we’re all on your side!
I agree with every word in previous posts --or should I say my experience echoes their's. I was diagnosed in 2001 after multiple clots and mini strokes. I too obsessed about what kind of life I could/would live going forward with a history of strokes and now on blood thinners. Well... I did give up mountain biking and I did not follow my dreams of learning to ski. But other than that--life has been good, and rich! At age 69 I still hike and walk every day, I completed online education ( with tests!) and am now a deacon in my church. I do still get veinous draw blood tests as often as my provider suggests. I try to eat roughly the same amount of high vitamin K greens every day. Last month I fulfilled a life long dream of hiking in The Lake District-- 40 miles in 5 days! For me diagnosis with APS has been a step forward, NOT a step back!
Fab reply! I have also taken my APS in my stride, quite literally. Granted I’m still in my fifties, but I headed for Nepal in May and spent 14 days trekking in the Himalayas, including several days at or around 5,000m. I was self testing when I could (machine doesn’t work above 4,000m), and stayed pretty steady, although INR did go up as there wasn’t a lot of green vegetables…
It’s totally life-affirming to read your message, thanks!!
You are very early into this diagnosis, I’m sorry I’ve not responded earlier. ( I’m having trouble with vision. )
1. It very well may be that you are not on the proper treatment for you personally yet. It took a while for me ( I’m in close concert with my rheumatologist and hematologist and neurologist and cardiologist at times together) to fine tune/ and some time boldly change corse of action.
2. You must have specialists that fully understand APS. This means they must have a broad knowledge base and working experience of APS specifically to see the gain the breadth of hands in experience and how nuanced it can be- with not so nuanced consequences to the patient.
3. It may be you do not need elequis. It may be you need enoxaparin. ( even at a slightly lower dose but at every 12 hours.) I should not worry about the INR too much with heparin ( which you were given bolus in hospital) and switched orally to NOAC form to as Elequis.
When we refer to INR here ( as a rule) we are speaking about patients who are on warfarin. The “thinness or thickness “ of blood is measured by INR as a tool to base the dose / dose adjustments of warfarin off of. The INR is drawn frequently as a rule in patients on Warfarin, and patients with APS need to be be very mindful of what it is in the back of their minds pretty much all the time, check it frequently, and stay very steady with the amount of green vegetables they eat, as the vitamin K in the green Veg affects the inr . It sounds like a full time job managing the vitamin K and INR, and in a way it is, it keeps patients healthy and steady with green vegetables! For patients who do well with warfarin, this particular medication is an absolute Godsend. This is why for so many years it’s been considered the gold standard for APS treatment. ( I myself have failed with warfarin multiple times, and am enoxaparin every 12 hours.)
The ultimate goal, of course, is to treat the disease upstream, and prevent the need to anticoagulants. Medical science is working very hard on this. Immune suppression helps in the mean time.
If I am not controlled correctly in any area of my disease, ( anticoagulant, immunosuppressant needed, ) I would feel very symptomatic.
Never discount the possibility of other auto immune diseases co- occurring along side APS. This is not uncommon. My APS specialists have told me it’s called, “loss of immunity”. ( this is the importance of a cell versed APS experienced rheumatologist.)
The most common co-occurring auto immune disorders with APS are Lupus, Sjögren’s syndrome, and Autoimmune thyroiditis. ( can also be known as Hashimotos.)
Recently a genome study found areas which indicated associations with APS, scleroderma, Sjögren’s, and NMOSA. I can include it in another link. This highlights what rheumatologist have noticed in autoimmune patients over all these years.
Remember APS is a spectrum disorder. Some have a milder presentation, some more disabling. The earlier caught, and controlled with proper treatment tailored to the patient, the better the patient will fare. As of today, the best practice is :
1.get a highly trained APS specialist even if you need to travel a little. Especially in the early days of your disease.
2. Get the correct anticoagulant and the right dose. Be patient. It may change . This is why you want an APS specialist hematologist!
3. You may need immunosuppressants- don’t be afraid of these. It’s very important to have…. And APS specialist! You want someone who is up on all the data on the multi center trials - and runs clinic in his or her center. ( I’m on Rituximab . I personally do well. APS specialists know we need our infusions very slow or we can react. We tend to have allergies- especially if we have POTS, Ehlers Danlos, Sjögren’s Syndrome, , because Mast Cell Activation Syndrome goest along with those.)
Where are you located? By your vocabulary- I think in the states. Me too. Let me know how I can be of help.
Thank you, it’s just a lot to take in. I replied to Lure2 in this post and told her I would have never know I had this had I not been short of breath and gone to the ER where I was found to have PEs. When I was released from the hospital after the first time I felt fine as well…besides getting my lung strength back and the occasional emotionally hard days thinking about having to come to terms with this illness, I felt healthy and still do…I still need to do my second round of testing at 12 weeks. I live in south texas. I am having a hard time finding specialist and getting a referral to a hematologist. I’m not sure if I would be able to afford it. I do have insurance but my medical bills are already piling up on me.
South Texas- you fall in the region of my rheumatologist. He handles all of San Antonio and south Texas. Dr Jose Roldan in San Antonio Texas . I can help you easily.
Kelly and all these sufferers have been mega helpful to me and inspirational. It is often a need to understand what questions to ask the specialists. If we know the correct question no doubt we eventually find some answers appropriate to our specific issues. Like Kelly I am on Rituximab now suppressing my immunity.
I often go on line and listen to previous recordings of Dr Graham Hughes. Easiest way to find them is doing a search on GHIC dr Hughes
Many people around the world are looking for these answers.
I always remember the saying. “Are you a victim or a survivor “. This sort of energises me
Good luck with it all. One day hopefully soon you will know how to deal with it. We really are lucky people that the medical fraternity are now breaking through these diseases. The future is looking a lot better hopefully for all of us.
Im same age as u have had clots on lungs both times twice and other organs have been intensive care twice....two children I have numerous issues with health but try stay positive which is tough I know....u need b adequate treatment and special doctors who understand this complex illness..there list on here so u can check Ur local Area.. feel free ask me and I can try help if can ..was diagnosed atv21 some days good others not so..i also have children
Hi there! We spoke before. There are 3 specific tests for APS. Being positive for all 3 is a little more challenging, but does not mean your life is over. Just different. Once you get your medication stabilized, your life will hopefully feel normal again. Here is the amazingly good news, you had 3 children! Many (a high percentage) people, like me, lost multiple births due to APS and only found out about it after being tested due to multiple pregnancy losses. Your kids are such a blessing. It is going to be crucial to get the most experienced medical team in place for you. Pulmonologist, Hematologist, a doctor that specializes in APS (often a Rheumatologist or Hematologist). The doctor who put you on Eliquis is not an expert so please find someone else. I have had APS since 2007. If you have major surgery, certain protocols must be followed. For example, I have to go on Lovenox anytime I have surgery. Eliquis is not okay ever. Any bleeding event is cause for alarm as someone with APS because of the meds you take, plus the high risk of throwing a clot, which can lead to an embolism. I have only had one clot (alower leg DVT) and it was after I had COVID. The COVID vaccine and boosters are dangerous for people with APS. I take a daily does of low dose aspirin and that's it, but I am twice positive, not three times. Migraines are common for those with APS so if you have had them that can be a reason why. You will need to become aware of the signs of a blood clot, not just the ones that goes to your lungs (one of the worst). A highly skilled doctor is going to help you feel normal again. Also, walk often and for at least 30 minutes. This is super important for your long term health and a good blood clot deterrent.
Wishing you the best. This is an amazing place to gain information and support. 🥰
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Reintroducing myself
My diagnosis
Anyone been converted to a DOAC from Wafarin
I'm new to this :/
