Triple positives?

[Ignacio182]

Hello there,

Just looking to connect with all the very few triple positives/ High titres APS fellows out there.

I have managed my condition with Warfarin so far, but wanted to check what have worked for you.

Greetings

[Ozchick]

My INR's were never stable on Warfarin and when newer anticoagulants came out they were soon contra indicated by Bayer. So I've been on Clexane (LMWH) and Aspirin for quite a few years and it suits me very well. Unfortunately there is not one magic pill that suits everybody

[Ignacio182 in reply to Ozchick]

I had a Mild Myocardial infarction while on warfarin (5.5 INR) on March. No stenosis, no cholesterol, normal Calcium, etc.

Just elevated troponin levels. Now recovering and on new meds.

I think Warfarin has been good for me at 3-4 INR level.

Thanks for sharing your story!

[Px123]

I found out I was triple P five years ago. One major venal clotting incident in my Iliac vein was the tip off. I have been blessed to be stable on warfarin and Hydroxychlorquine. I’m scanned once a year. Titers on the low end of high and have come down only slightly. I suspect I’ve had it for years and have been lucky with few to no symptoms. Good diet and exercise too!

[GinaD]

Once upon a time I was a triple positive. I started warfarin after multiple DVTs and mini strokes. And the warfarin did its job and with time and documentation I learned what foods to eat ( and how much) and what to avoid. But the brain fog and severe fatigue that many of us know are associated with autoimmune flairs continued. Then a friend nagged me into trying the Atkins Diet, which I only agreed to try after my doctor enthusiastically agreed I should try. And so... no toast for breakfast, no sandwich for lunch, scrutinizing cans for carbs. And within 2 days I felt I was in a brand new body!I checked in with my doc ( whose uncle had been my pediatrician) and I suggested that.... " Could I have Celiac?" "Yes! " she answered. "My uncle thought you had Celiac, but your Mom thought he, and your father, were gaslighting her." 2 mysteries solved. I am allergic to gluten AND I now knew why I was blamed for my patents' divorce. And a year later, blood tests showed I had gone from triple positive to triple negative. I remain on warfarin and I avoid gluten. Dr Hughes himself noted a correlation between APS and gluten sensitivity. Except, dont make major dietary changes ( and avoiding gluten is a MAJOR change ! ) without consulting with your doctor or dietician.

[Ignacio182 in reply to GinaD]

I always read your Posts Gina... inspiring.Maybe i am gonna need to look into my diet.

Since I enjoy very much eating carbs, will be difficult for me.

Blessings!!

[GinaD in reply to Ignacio182]

Pasta made with Quinoa is OK. GF bread also ,O.K but they mold quickly so I keep mine in the freezer and stick 1or 2in the gluten free section of my toaster. Eating out is the hard part as many waiters dont know what gluten is. I usually say, " I have that inconvenient gluten allergy. I will try to order things they do not have gluten, but would you please check with the chef and come back and correct me if I have my mistake." Of course, nowadays, many restaurants have symbols or letters on the menu that indicate what does, and does not have gluten. Rice is gluten free by the way. And areas of the planet that are not suitable for wheat crops tend to be gluten free--such as Indian, Thai foods ( excepting those free won ton crackers!) Many Mexican dishes can be served in corn or flour tacos or burittos. Ask.

[Ignacio182 in reply to GinaD]

Thanks for your insights!I will give them a try for sure.

I love mexican food

[user666 in reply to Ignacio182]

I too have come from high positive to zero detection with lifestyle changes but actually eat tons of carbs and gluten! I added meditation, daily exercise and high fiber to my day and my health is optimal right now. High fiber diets have been shown to ameliorate antibodies in lab studies. Stress also ramps up our immune system so distressing can perhaps also lower antibodies. It might not only be a gluten connection…

[JohnnySouthside]

Good afternoon, yeah I'm tripple APS as well had 3 dvts, my inr is now between 3 and 4

[Ignacio182 in reply to JohnnySouthside]

Thanks Johnny, i am 38 and male as well.Have had 1 DVT and recently a heart attack (notrelated to APS).

Doing ok with treatment with Warfarin.

[Lure2]

Hi Ignacio182, I wonder if you still got Micro INR for home testing INR?

I still do but there is always a difference between the vein-value and the fingerprick-value around 0,3 - 0,7 (higher with the machine).

I stay at 3.5-4.0 in Warfarin and I have been triplepositive all the time with high titres. In Sweden you should stay 160 in both S-Kardiolipin and S-Beta2GP1.

I have also several years have Pulmonary Hypertension and Valve disease (Mitral valve and Tricuspid-valve).

Kerstin in Sweden

[Lure2]

Sorry. A mistake from me.

I meant; In Sweden you should stay 160 in both of them. (160). Ok now it is correct. How about you?

Kerstin

[Lure2]

My God, Wrong again. I can not understand why. Something wrong with the computer? Under 10 but over 160 in both antibodies. That I think is a great difference. I am so sorry I have tried twice and both times the computer will not tell you the correct values.

Kerstin

[Ignacio182 in reply to Lure2]

Hey Kerstin!

I still use the microINR machine to self test every other day and do a monthly blood draw to compare.

Measures are very accurate, 0.2-0.4 difference even with my + Lupus Anticoagulant.

I had my antibodies measured the other day and were 112 -119 range. I am always high and triple positive.

When I was diagnosed in 2018, the values were>200- 400.

On April this year, I had a mild heart attack with no arteries blockage, and my INR was 5-6 at the time it happened. No clots found.

I am trying to rule out microvascular dysfunction.these.months.

Blessed to be alive, staying positive and optimistic as I am father to 3 children and there is plenty of life ahead. (38 years old)

Lets.stay in touch and wish you good health!

[Lure2]

Thank you Ignacio,

The same to you of course. When I was diagnosed in 2003, I had lower titres but after Warfarin they were over 160. I use the machine every or every second day to know how the INR change. If it is too high I eat more vegetables especially Brussels sprouts. If it is under 3.5 (and then the vein-value is a bit lower) I must take a Fragminshot. My Hematologist is very helpful and understands APS. When the INR is very high there is a greater difference between the real value in the vein and that with the machine in the finger than if the INR is lower. I also do blood comparing blood draw when I am at the hospital

I hope they follow you with Ecocardiography and that your Blood pressure is not changing a lot.

I am a grandmother of 3 but this rare illness takes much of my time actually. I do not write anything here but I read very often if something is interesting and I can relate to.

Kerstin

[KellyInTexas Administrator in reply to Lure2]

So happy to know you are reading with us here, Kerstin. I’m not on so much anymore because my eyesight is not so great. I make a lot of mistakes in typing or reading incorrectly because of it- so we all manage to understand in the end!

Computer issues, language differences, or bad eyesight- we can only hope helps in the end if we can, have the ability. Sometimes I cannot.

Take good care of your self. Juhannus )Summer Solstice ) is almost arriving in Sweden/ Finland. kökkö 🔥 by the lakes to keep the witches away in Finland were a beautiful cultural surprise for me- sweet memories I have of my time there as a student . They were glowing all up and down the lakes / summer cottages.

[Pooky7]

hi. I can’t eat gluten, eggs or sugar. I eat organic. Buy meat from my friend, grass feed organic. I try to be in ketosis. Carbs make me sick and sweat. Weird — but I just can’t digest well. I eat high protein and veggies. Lots of blueberries. I also have muscular dystrophy at age 59. I walk 3-4 miles a day and my neurologist scratches his head. The only med I take is warfarin. Would love to get off someday

Anyone here have APS start after the hepatitis B shot? I took it as I started working as an OT in a hospital in 1992. I was told by blood dr and have read that there is a link ???? It is autoimmune. And shots can cause reactions 🤔🤔

[Tofino5]

Hi Ignacio182,

You asked: what works for you? I am triple positive with high titres, also lupus anticoagulant, sjogre's, hashimoto's and so on.

What works for me is Eliquis (generic apixiban). What never really worked for me was warfarin. My INRs were very unstable for the 10 1/2 years I was on it. I watched my diet obsessively, rotated food sources of vitamin K every day, and going for the same daily total mg's, to no avail. I also take a vitamin K plus D supplement to try to even things out. I sometimes had 3 blood draws in a month. And being triple positive with high titres, meant the self testing machine was sadly, wildly unreliable.

Did the gluten free diet for 3 years, no help since I am not gluten sensitive, but I love that it might make a world of difference to someone - it is worth giving it a try. I had severe migraines, to the point that I had to retire early. My APS specialist tried everything, and figured out that my body is sensitive to binder and filler ingredients holding the active ingredients. She had success with Eliquis in her APS patients and it was well researched, and I switched to that 7-1/2 years ago. No clots, FAR less nosebleeds and bleeding issues on Eliquis, and reduced migraines, although I've since added the Aimovig shot for migraine prevention. And of course, very few diet restrictions, so I'm able to eat all the good veg without worry. (Apixiban-Eliquis and rivaroxiban-Xarelto are not the same).

Those are my main thoughts, and working closely with your specialist is the only way to know what will help You. Eliquis was a life saver for me. Best of luck and let us know how you get on.

Anita

[Ignacio182 in reply to Tofino5]

Thanks for sharing your story, Anita!It is amazing how some medicine suits some people, and others do not.

Warfarin helped me tremendously with migraines, but 3 months ago I had a 12 day invalidating episode of migraine (even though INR was 6).

In spite of being fairly stable on Warfarin, I stopped drinking alcohol, since that triggered the episode of migraine.

Doing fine now with lots of meds, but happy to enjoy family daily.

Cheers

[Tofino5]

Yes and thank goodness there are options available. I’m glad you are doing well. I'm happy for 0.0% beer, since I like beer but alcohol gives me migraines too.

There are few places to connect with each other, and I’m glad for this.

Have a wonderful day!

[KellyInTexas Administrator]

Hi ignacio,

I’m double positive,( aCL and B2GP1 with intermittent LA positive)

I have a story very similar to Tofino5. Wildly unstable on warfarin despite adhering to very disciplined diet re vitamin k and lifestyle stability.

In fact, she and I share the same physician who suggested, because of the dangers of this labile warfarin level, to try apixiban. ( it has a bit more “horse power” than rivaroxaban, and therefore is a better choice for APS patients who fail Warfarin.

That said, it must be used with statin and hydroxychloroquine. It also should be overseen by an APS specialist. ( per This prescribing physician, at least in my particular case, as I was a bit unstable re: clotting going into it- I was clotting through my warfarin, and target inr was at 4.5 at that time. )

I had the blessing of my local hematologist to trial it, and my Gp. It sadly did not work for me, but I’m not a normal case, and we can’t figure out why. This physician Prescott at a little higher dose if you’ve had arterial clotting, a little lower if venous, and might customize the dose for certain situations.

I started having APS symptoms pretty quickly, and came off it in about a week. ( with DVT’s and a return of seizures.)

It’s possible to add a bit of clopidigrel or aspirin. You can have a plan to bridge back up with enoxaparin if APS symptoms return. ( if you have ever had a stroke out of the blue with no sign leading up to it you are not a candidate ). If you know your symptoms of APS well, can accurately predict when your INR is low, test it by vein, and confirm what signals your body was throwing at you, then you possibly would be a good candidate to do a trial run on apixiban . ( something like 7.5 every 12 hours. I think you are male? ) i was 5.0 am then 7.5 at night.

Next day 7.5 / 7.5 ( morning/ night)

Next day : 7.5/10.0

I was texting with doctor-

Then did 10/10

It clearly was not enough/ or just wasn’t the right medication.

Enoxaparin twice daily is really working much better.

I also trialed Fondaparinux with similar results- within 12 hours - disastrous. Mouth and chin turned blue- took a month to return color.

I’m now on enoxaparin every 12 hours. Troughs are a little low and peaks a little high.

[Ignacio182 in reply to KellyInTexas]

As usual, thanks for your insightful comments.

I am luckly stable on warfarin, testing every other day on microINR machine and comparing to vein once a month.

I wish you are doing wonderful on heparin. I have always thought that is the safest way for APS patients.

[MrBigDog]

Was diagnosed back in 2009, after bilateral pulmonary embolism, and have been on warfarin ever since. My hematologist moved back to California early this year and I now have a new, younger doctor in charge of my care. He told me that I was triple positive at my last visit, but I'm not sure what that means...

[Lure2]

Hi,

Ask for a copy of the blood results. Triple positive means you are positive toKardiolipin antibodies, positive to Beta-2-Glycoprotein 1 and also positive to Lupus Anticoagulant.

Hope he knows this illness and knows that triple positives often need a higher INR and usually Warfarin as you already have. We often need to self test as our INR my change a lot up and do in a short time. I have been triple positive for 20 years with high titres all the time.

Kerstin in Stockholm

[Brenda_APS]

APS here too.I had bilateral PEs twice. Hated Warfarin since I was always all over the place. Then I was put on Eliquis. That's when I suffered another PE.

It was then that I was tested for APS.

So I now get to enjoy life going to the hospital every week or two for blood draws then to the Anticoagulation Clinic for my results and plan for the next week or two.

I am SO frustrated!!

Curious if everyone has to go in for blood draws instead of the INR finger poke and mere or if my Hematologist is just being extra careful with me! Ugghhh