Hi all.
Just wanted to ask if there were alternatives to Warfarin if you have APS?
I was told Apixaban and at least one other don't work for us and read long term use of Warfarin thickens the arteries and weakens bones.
I also have suspicions about it causing some side effects with me.
Hoping to get refered to a specialist very soon.
There are quite a few people on here on long term Warfarin -ie years- and do very well on it. Didn't suit me due to very unstable INR's and the current DOAC's are no longer recommended for APS. I'm on 2 shots a day of Clexane - a LMWH + Aspirin 100mg and so far works OK. I do have a team of Specialists who look after me that I can contact if things go haywire. Keep a list of your symptoms so that you don't forget stuff when you get your appointment to make the most of your visit.
How much did your INR jump about while on Warfarin? How frequent were your blood draws?
I just feel really terrible and there's no way of me knowing what my INR is till a day after my next draw in 10 days time!
It could jump from 1.2 to as high as 8 in a few days and I (guessing here) never on higher than about 5.5mg. Used to have bloods done every few days and get result same day. Some days when it was high and I'd been working in the garden I would look as though someone attacked me with the slightest scratches 'leaking' all over me. Band-Aids probably had their share price go up with me plugging all the leaks!!
I did have a few years on Rivaroxaban (Xarelto) until the makers (Bayer) no longer recommended it.
The lab would always ring my GP on the day of the test and then he'd advise whether to change the dose but he'd never had a patient whose results were so labile and it took a few Specialists to finally find one that understood APS -a bit of buck passing in the early days until diagnosis.
I'm on 5 mg of Marvarin nightly. I go to my doctors every 4 weeks. My INR is 2.2 ~ 2.5 and is stable. Next visit is in 2 days time.
Not really, the arterial calcification is a worry, but not much we can do about it, animal studies show it is dose and time dependent, we're on it for life so can't change the time but can try to stick to lowest INR range that works. Some of us can tell what INR level we need from day-to-day symptoms, for others success can only be measured by "did you have another stroke in ten years time" - tricky to set your range on that...
Heparin is the only real alternative that might be considered "proven", still I don't think it's licensed other than in pregnancy (when it is effectively the only option). DOACs are considered not to work, although the evidence (either way) is awfully limited, and there are many of us who are on them successfully. You'd have to find a doctor willing put you on them, and they may or may not work for you.
I think _all_ anti-coagulants mess with the calcium metabolism and have the bone-weakening as a risk - pretty sure long term heparin as meant to be worse than warfarin for that.
Anti-platelets are not good enough on their own, but are often used as an addition (e.g. INR 2-3+anti-platelet as alternative to INR 3-4). I am on 2-3 (after much debate and disagreement between several consultants), if it needs to go up I would ask for anti-platelet added in instead. I was on anti-platelets only for months before starting warfarin, and felt much better in that time than I ever have since switching to warfarin.
Warfarin can take a long long time to get used to, some find it helps and they feel better immediately, for others (like me) it takes years before you feel just "ok" again, sometimes. Some feel better with higher INR, generally I feel worse, but after years of tracking it I am reasonably convinced the cause-and-effect is the other way round - high INR doesn't seem to _make_ me feel worse, it just seems to often happen when I've got a bug of some sort so I feel worse anyway, and infection shoves my INR up. Other times it goes up and I feel fine, but no better than when it's low.
This APS sounds like a monster with a thousand faces
It is.. that’s a terrifyingly accurate description unfortunately.
Im one of those patients who have found warfarin to be a literal life saver! I've been on it for 20 years now. My bones are actually denser then would be expected for a 65 year old female. I walk and hike. A lot. And I am so fortunate to have a "tell" symptom when my blood is too thick: when I am laying down for a while the back of my head gets a bit numb. Initially, I had to have an INR of 3-4 to be symptom free. But since going gluten free ( 2004) I now am asymptomatic with an INR as low as 1.4!
Two points I will make: First, warfarin's reputation as a risky drug is due to the bleeding episodes of patients who take warfarin because thry have a sticky SPOT in their circulatory systems, such as a stent. But we have WHOLE sticky circulatory systems. In all my years of following this site I can only recall one instance when an APS patient had a bleed.
Second: Warfarin has been prescribed for many years mow. We know what it does and we know what it does not do. The " side effects" are actually natural consequences of its prescribed function-- slowing the effects of Vitamin K. It is actually, for us APSers, a relatively safe treatment.
We all have to get used to taking it. Keep a log of your foods and activities and INR #s. You will notice correlations. Also, back in the day warfarin patients were told to eliminate Vitamin K foods. Now we are told, by most docs now, to adjust warfarin to meet healthy leafy greens intake.
I will add that some drugs are " easy" to use: swallow a pill -and thats it! Warfarin does require vigilance in food variety and activity monitoring, as well as exercise. But for me, and for many of us -its been a literal life saver!
Intrigued by the gluten free angle. Read the papers on gluten and APS, as well as around autoimmunity generally. The most I've done is ten months then I caved in and had it.
Prof Hadjivassiliou a neurologist at Sheffield reckons a year is the minimum time a person needs to be gluten free to see a real difference for neurological symptoms. There is one small study where a patient's APS antibodies went into remission after two years of gluten free (strictly).
Was wondering how long you were gluten free until you noticed some significant changes, and what those changes were.
Didn't go on Warfarin for the first year post-diagnosis due to fears around it being lifelong etc. Was on Plavix, aspirin, and clexane. They didn't help with symptoms (memory, headaches etc), but I didn't have a clot.
After a year, Prof Khamashta at StThomas's gently pointed out:
Play the odds, you can try warfarin and have a good life, and the chances are you won't clot. Or you can worry about calcification that may or may not happen in your far future and not take warfarin. But you might clot or get seriously ill in the mean time.
I went on it, and it really did change my life. But I self-test at home, and this makes a massive difference.
Full story: In 2004 the fatigue had returned. With a vengeance. 12 hours sleeping a night plus 2-3 naps a day. I had/have a friend who was persistent in insisting that I should go on a ketogenic diet. I kept explaining to her that since I was on warfarin I needed to stay on a consistent diet. But finally, I promised her I would bring up the issue at my next GP appointment --which I did. (My GP at that time was the niece of my pediatrician.)
To my great surprise, that GP thought that trying the ketogenic diet was a great idea. So -- on Monday-- no toast, no cereal. My daughter was heading back to college that day and I insisted that I felt well enough to take a hike at a local park. We went, and she insisted that we turn around for a shorter hike then I wanted as I felt fine enough to do the full 5 miles. But, given how tired I had been, she insisted we turn around to make it a 2 mile hike. When we got home -- no nap!
Next day: drive daughter to airport in the morning, return, look at the house and decide its time for a house deep clean. Done. Lunch. No need to nap, want to do something, so -- load up my bike, drive to a local park and bike 10 miles including up a 500' hill.
3rd day. I still have so much energy. This can't be 'just" the keto diet. I pull a book of the shelf that I never read (because every time I tried to read I fell asleep
"The Autoimmune Connection." I had been gifted the book by the author because I was the anonymous interviewee for the chapter on APS.
Read the book and tried to put 2 + 2 together and concluded, "I must have Celiac! That's the only explanation I can think of!"
I phoned my GP. The staff had been instructed to fetch her should I call even if she was consulting another patient "Gina. How 's that keto diet working for you?"
"Well, I feel like I have a brand new body. Could I have Celiac Disease?"
"OF COURSE YOU HAVE CELIAC!"
1 month later I had blood work which showed that for the first time since age 4 I was no longer anemic. And all my rheumatoid factor #s had fallen from high to what one hematologist called "boring." The following month I saw a gastroenterologist, My gluten tolerance test was negative, but given the definitive changes in my blood values that doctor said that I clearly had celiac and should stay gluten free.
Turns out: My physician Father and my pediatrician had tried to convince my mother that I had celiac when I became anemic at age 4. Mother was convinced that he was gaslighting her (he had before.) And then came the divorce.
Sorry for the long post -- with info I have posted before.
Since going GF my energy level has remained great -- except if I am exposed to a bug, when I basically just sleep it off while poor hubby can be really sick. My fibrocystic disease is gone -- no more worrying breast lumps. No more swollen lymph nodes. Lost 20 pounds without even trying. Can now read for hours without going to sleep (usually -- depending on material.) No more repetitive UTIs. No more GI issues. And I am asymptomatic for APS issues even when my INR is below 2. And now that I am not anemic I can hike straight up mountains breezing past the rocks and fallen trees where, when younger, I had stopped for a good pant.
The hematologist I saw at Duke before my hip replacement believes I do not, and never have had, APS. I put him in contact with the diagnosing physician, but given all my healthy blood numbers, the Duke heme says those "boring" numbers must be because the APS diagnosis was wrong. His theory is that the anemia had sparked a rise in WBC and THAT was the blood issue. Except, his theory does not play out with my history. Yes, my WBC count was once high and found after DVTs in 1986. I was put on warfarin, WBC #s fell, warfarin sopped, and then the mini strokes started even though WBC#s remained normal. Then the 2001 APS diagnosis and return to warfarin and no more blood issues.
So -- given my weird history and rise, fall, rise and fall of various blood values, that Duke heme may be right. But I don't want to come off warfarin until some viable explanation is given. But IMO, Celiac was the root of all of my health evils.
So at age 65 I am healthier then I was at age 20. Yes, there is the arthritis, but .... I have to smile politely when others point out that it is challenging to deal with the diseases of aging.
And one more observation (sorry!) Given my poor health for so much of my life I am astonished when people around me complain that staying on this or that diet, or exercising or doing this or that health habit is just "too inconvenient." I am so grateful that just by switching my diet I have finally rid myself of all those health issues. I say "If a doctor told me I need to do push ups with my ear lobes, I would try to learn how to do it."
Honestly inspirational. From your previous posts I've decided to get in contact with a FM. I hope he can fit me in soon. In the mean time I'll try cutting certain things to see how I feel and respond. Gluten then perhaps Dairy. Think I'll look for a book or site for ideas because I'm used to gluten with everything. Breakfast cereal, some sort of sandwich for lunch and rice, cousins cous or pasta for dinner. Breaded fish and Veg sometimes too!
It took me a while, and I do enjoy cooking myself, but one can get used to GF. Only thing I can not replace? Good, dark stout beer. Nothing Ive tried so far equals a good dark stout.
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