Hubby hates the warfarin and found a doc willing to give him Eloquis. He was so happy while it lasted.
He wound up, about 3 weeks later, with a numb face and leg. ER tests showed ‘mini-stroke’. Now he’s back on warfarin, though he hates it with a passion.
Sorry this happened to him blessings it wasnt a full blown stroke. Eliquis is not for APS patients doc shouldn’t have put him on this for APS if he had a history. Yes warfarin is a pain make sure he keeps a catalog of what he eats and what activities he does (as well as his dose that day) so he can see how the warfarin is adjusting to him and if anything must be changed. Best of intentions,Cindy
Thanks for the advice. 💕
There is a very good book and website, Eat on Warfarin, well worth a look at, he may find it helpful. I hope he is feeling better, even if he does not like the change of medication. MaryF
I’ll check into it. Thank you. 👍🏻
He’s been on the warfarin for many years. He’s over 65. And he’s had 2 strokes now. All 3 of those qualify him as a person more likely to have bleeding problems on warfarin.
He’s also had 2 heart attacks.
He’d had blood in his stool, which his gastro is now planning the ‘swallowed camera pill’ for, since the endoscopy showed no internal bleeding. I think that’s why his hemo agreed to the switch to Eloquis. Due to internal bleeding.
Not long after being switched to Eloquist, the internal bleeding stopped, which is possibly why the endoscopy, done at that time, showed nothing.
His PTT is always ‘very high’ on the warfarin, regardless of being in the right INR range.
I had to inject him in the stomach with heparin, while they moved him back to the warfarin, and the injection sites would bleed for hours afterwards.
He winds up in the hospital about twice a month now, and sometimes says he wishes he would just die. Very frustrating and depressing. He’s 66.
Always feeling too sick to go out when on the warfarin. When he was on the Eloquist, we were out almost every day, and he seemed to feel well and hopeful again.
So disgusted...
Hang on in there, and do use this forum for support whenever you wish. MaryF
Thank you, Mary. 💕
Do keep in close contact with GP and hospital, if the Warfarin is not working as it should do. I have never had it, only Fragmin injections. MaryF
Gut probably stopped bleeding due to eliquis not doing what it was intended to do🤷♀️But then again it didnt anti coagulate throughout his body either.. i understand all the frustration !
I really empathize I've got APS and been on warfarin about 25 years .. I had never had a bleed until Sept 2017 I had my first rectal bleed it was bad I ended up in hospital lost about 2 pints or more of blood .. I had another in Feb 2018 after bowel polyps were removed and lost 4 1/2 pints although I wasn't anticoagulated at the time my INR was 1 .. then I had another in Sept 2018 that wasn't as bad
Like your husband except for one with bowel polyp removal .. they couldn't find anything with colonoscopy and camera down throat
I've had about 4 colonoscopy and 2 ODG (down throat) and not found out why
There's a question as to the first one being a polyp bled but I am not sure and I was told they were tiny .. and the last one in Sept 2018 there were no polyps to bleed
So I do empathize .. is your husband bleeding ever month on warfarin but he didn't at all on the other drug .. I. Am so sorry for you both x
Could he be allowed to selftest? Is he positive to all the three antibodies they take for diagnose of APS incl Lupus Anticoagulant?
What theratpeutic level is he on with the Warfarin?
The most important thing is to have a Specialist of APS and someone who knows how we react on Warfarin.
I selftest in Stockholm and decide about my INR myself. If the INR is too low one day I take a Fragminshot till it is in range again. I am 75, triple positive with heart/lung-issues.
I am not a Doctor but I wonder why he has an internal bleeding.
suppose you know that we must eat the same amount of greens and not change the Warfarin too much, as it takes 2-3 days before we can see the result. If I am too high in INR one day (should be at an INR of 4.0. ), I eat a little more of the greens and if I am too low one day I am careful with the greens not to take too much that day. The greens make the INR change and it does not take as long time as it takes if you change the Warfarin. Do not change the Warfarin at the same day as you also change the greens.
It must be difficult if you can not selftest and if you are positive to the Lupus Anticoagulant also. Also very difficult if you have got a Doctor who is not knowledable of APS.
He should not feel unwell on Warfarin. It must be that he is on a quite too low INR and the Doctors are afraid of any bleeding. It is understandable.
You know we do not bleed from APS but clot a lot. We need an INR of 3.5 - 4.0 or even a bit more to feel ok and minimize the risques for PEs and stroke. I wonder why he bleeds........
His doctor insists on 2-3 INR, no more. All his past doctors have been the same.
Next Monday he’ll be taking the ‘camera pill’ which will work through his digestive system, taking pics for the gastro doc. Hoping he finds out what is going on...
Doctor also will not allow self-testing, as she has had experience with too many who wound up taking too much warfarin due to their beliefs they were too low. So she won’t prescribe the testing machine for anyone now.
He does not have lupus. And the hemotologists here mainly handle chemotherapy, so they don’t have much knowledge of aps, don’t make as much money on his appointments, and don’t appear to have many, if any, other aps patients.
And he does watch his greens, having at a usual level, and never a bunch at one time. He kind of rations them out.
Same here with self testing.my doctor won't accept as had patients before who took took wrong amounts of warfarin and miss read machine.
Hi again,
A Specialist is a Must for us! INR 2.0 - 3.0 is too low but you did not tell me how many antibodies were positive when he was diagnosed with APS. He has had APS for a rather long time now.
Lupus is another illness also called SLE. I meant LA ( Lupus Anticoagulant) which is one of the three antibodies they test twice with 12 weeks between the bloodtests to find out if the person have APS. Important to know the antibodies.
I have all three antibodies positive incl Lupus Anticoagulant. The Lupus Anticoagulant can make it a bit difficult to selftest but without it it could be easier to keep the INR steady at the correct level which is so very important for us to feel good and avoid complications from too thick blood as that is the main problem for us - too thick blood!
You see there is a big difference with "ordinary people" taking Warfarin for heartissues etc but APS-patients are difference - we need a higher INR and if the Doctor is not a Specialist of APS he will not understand this and how important it is.
The problem is that your husband needs to keep his INR higher and stabel also. Look for that Doctor!
Debbiesue63 no doubt is an American. Doctors here will not permit a higher INR and stick with the standard of 2-3.
Also my health care doctors said NO to self testing, so I bought my own machine. Yes, I used it correctly, but alas, it would always give me error codes or inconsistent readings when compared with the lab. Roche warned me that it may not work with APS (I also have Lupus).
Hi California Gail,
Are you positive to Lupus Anticoagulant? That has nothing to do with Lupus (SLE).
You must do several parallelltesing within a very short time (vein - fingerprick-test)
If it is always the same difference you can selftest. Do not forget to write everything down and keep the greens and Warfarin amount constant (if possible)
Also the vein-value is always the correct value.
Yep. American. And none of the blood docs my husband has had would agree to an INR over 3. In fact, one of them (who I encouraged hubby to get rid of) was happy to leave him at a 1.7 INR. 😡
Hubby was tested by 2 different docs at 2 different times. Both determined he had aps. Both determined he did not have lupus.
But I don’t remember exactly the different issues on the test results.
He was tested the first time, right after his first stroke...
You must definitely find an APS-doctor. That one who was happy to leave him with an INR of 1.7 did not know anything about our illness.
That is a nighmare when you can not have a Doctor who understands that we do not bleed from this illness but clot (a lot).
Have I asked you to read "Sticky Blood Explained" by Kay Thackray?
Which one of the two Doctors is now in charge of his anticoagulation? Ask him how many antibodies your husband tested positive to when he had his diagnose! Ask for a copy.
One of the antibodies, besides Cardiolipin and Beta-2-Glycoprotein 1, could eventually be Lupus Anticoagulant. You can be diagnosed by one antibody, but if you have got all three of them you sometimes need a higher INR as the clotting-risque could be rather great. (Triple-positive) This has nothing to do with Lupus but usually 30-50 % of the SLE (Lupus)-patients also have Cardiolipinantibodies but do not necessary have APS. This is a tricky illness and your husband need the best care he can get.
I am prescribed warfarin as well for APS and a mechanical heart valve. My range is 2.4-3.4 but I never feel great when it's within that range. The times it up to 4.0-4.2 because of something I ate, I feel fantastic. A lot of energy and practically symptom free. They always lower my dose when my reading is higher than what they think is ideal. I try to tell them I feel fantastic when it's higher but they say no, it's too dangerous for a bleed. I understand your frustration and I hope you can get things straightened out for your husband 🙏🏻🙏🏻
Hope he feels better soon, just to say that I self test the machine is really expensive but luckily I get the test strips on prescription and my doctors support me.
It reassures me that my INR is in range, so a lot less worry
Wow! Lucky to have good doctors. 💕
Took 20 years + to get one actually 2 haematologist and a neurologist who actually believes
I agree-my life on lmwh(lovenox) inj every twelve hours has much improved my outlook on life too
I have no idea how you can live on those shots. I hate giving them even, never mind getting them. Nasty bee stings. 😳
Thanks for the advice on the shots. The doctors aren’t much help in that area. 👍🏻
Good morning,
I am so sorry to read this. I too felt absolutely awful on warfarin so they put me on phenindione instead. Apart from bruising very easily and wounds bleeding for ages , I do have a therapeutic range of 3-4.5, I am absolutely fine on it. I do the enoxoparin injections when my inr drops below 3, yes they can be painful but it only stings for a minute, and I look at it as a minutes pain is keeping me alive.
Hope this could be an option.
My APS docs in Denver switched me to Eliquis and I have had way fewer side affects and no issues after 5 years. I had a venal sinus thrombosis that started the journey in the first place...The testing on warfarin didn't bother me, but the crazy headaches and odd feelings in my face and head were awful.
I’m so sorry you and your husband are going through all this. I was on warfarin for 10 and a half years and I did not do well on it. I had severe migraines and retired early because of them, and my INR was very unstable. It turns out the migraines were a side effect of warfarin. My APS specialist switched me to eliquis and it is great for me. I don’t have any bleeding problems. Good luck to you and don’t give up looking for answers.
eliquis isnt recommended for aps anymore, says so on the adverts. i did well on xarelto for a long time, but started with dizzy spells. the question is was i getting a therpeutic dose, no answer came. so i exist on lovenox and a baby asprin. good luck if he liked eliquis hell love xarelto, but i dont know if thats not recommended now
I'm jealous of you who have done well for many years on a NOAC. I wanted to switch to Eliquis so much but my rheumatologist, hematologist and my cardiologist (yes, I have a few problems, thank you Lupus) all said NO, there's not enough data for APS even though "theoretically it should work." Waiting for more data from the big study, I believe to be finished in spring of 2021.
As info from a trial in 2018: The trial was terminated prematurely after 120 patients had been entered because of a higher rate of adverse events with rivaroxaban versus warfarin (19% vs. 3%; hazard ratio, 6.7; P=0.01), including arterial thrombosis (12% vs. 0%) and major bleeding (7% vs. 3%). There were no episodes of venous thromboembolism.
The reason that the arterial thrombosis rate was higher with rivaroxaban than with warfarin might be because it inhibits only clotting factor X, whereas vitamin K antagonists affect several clotting factors (II, VII, IX, and X); this distinction might be especially important in patients with APS. There might be other explanations for the difference in efficacy between the two drugs, but the results of this trial strongly suggest that DOACs be avoided in APS patients.
the commercials for eliquis have a written statement that states not for patients with APS
Bayer (manufacturer) definitely do not recommend Xarelto or other DOAC's for APS. I did well on it for a few years until I had a few weird episodes going back 6 months which have been diagnosed as Epilepsy. I'm on the last day of an ambulatory EEG to prove or disprove this. I'm now back on twice daily Heparin and although it's a pain to self inject each day it's just one of the things I have to live with to keep well.
London Doctors/Differing Opinions
APS medication( warfarin) and plaquinel for lupus 
APS diagnosed July 2018 - still unwell
Confused & anxious about APS
Angry with St Thomas's
