We saw a new hematologist this morning and he suggested that my husband might want to consider switching to another blood thinner. Hubby had his 3rd stroke in July with an INR of 2.5. Our goal has been mid 3s for several years. This Dr. suggests "he has had 3 strokes on Warfarin and baby asperin...that tells me it is not working for him." We are, of course, concerned as we really have only had our GP monitoring (who is letting us manage his Warfarin). We were wanting to find a specialist as he needs shoulder surgery and the surgeon referred us to this Dr. He said he has treated many with APS and would recommend other thinners. It is nerve racking, as seems like the other thinners are still new on the market in our minds and he doesn't want to be a guinea pig and have another stroke.......
New Dr suggests my husband go on a di... - Hughes Syndrome A...
New Dr suggests my husband go on a different blood thinner...what is everyone on? He has had 3 strokes on Warfarin....
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Dear grammy4him,
I just included a link above.
I have to wonder if part of the problem has been that your husband might need a slightly higher INR.
So is he finding the problem that the INR is difficult to keep stable? It does sound that way if it dipped to 2.5.
It’s always worth a try - the Lovenox ( enoxaparin.)
I was also very unstable on Coumadin. I switched to once daily Lovenox. This is a mistake. I formed a DVT and had a quick return of migraines. ( I have never had a full stroke.)
Make sure it’s dosed twice daily, As an APS Specialist Hematologist told me it is critical it’s dosed twice daily, not once. Unfortunately I did still develop a DVT, but it was much more effective than once daily dosing.
If he is terribly unstable with INR, and you feel the New Hematologist is knowledge about APS, you must do something .
I wish you every success in the world.
Kelly ( with you here State side in Texas.)
Hi grammy4him, I agree with Kelly. My target INR was raised to 3-4 several years ago. When I drop below 2.7 I have Tia’s-confusion, slurred speech, awful balance problems. I also take aspirin along with coumadin but I take more than 81 mg- baby aspirin. I think I need several adult aspirin per day and my md agreed. I also take aspirin for headache pain so I frequently take more than 2 per day. Tylenol has never helped my headaches.
I was in the hospital 4 years ago and my blood clotted in the tube before they could get it to lab. They redrew my blood, rushed it to lab, and it was 2.5. I called husband who rushed to hospital with Lovenox, which I immediately took after notifying nurses.
Good luck on finding what works best for your husband.
Nancy in West Virginia
I think it's more likely he needs a higher Inr and if strokes continue then they should add something such as aspirin to the warfarin. I'd stay well away from the newer drugs and find a Dr that has a better understanding of Aps.
Hi. I continued to have stokes on Wafarin and am now on Clexaine. So far so good!
I had another TIA 2 weeks ago I’m now on Aspirin as well as warfarin My INR 2 weeks ago was 2.1 then I had the TIA a few days later it was 3.1 they want me in the range 2.5 -3 it’ll be interesting to see tomorrow what it is now
It’s ver very frustrating I think I’m doing everything right and then it all changes I’d love answers
Hi Gram - i also have a very erratic INR and am on Warfarin sulfate - we have considered alternative new oral anticoagulants- and even a cocktail of warfarin and Enox . the end result was that being an APS triple positive primary male in his mid sixties Hematologist and i came to the conclusion is that the warfarin although not the stablest is the most powerful anticoag that I myself with my condition can use. I test my INR every 3 days not so much as to adjust amount of warfarin but to make sure I am not dropping way to low OR shooting up way to high .I have never had a stroke { Thank God } but i do have a real fast clotting problem . So this was the results of what I went thru with Doc's and my condition. Hope this is of help .Maybe more frequent testing of INR would be a thing to consider. here if you would have any question's and would be glad to answer - best to you both C & J here in New Hampshire USA
Hi, a lot of people who have been in this situation, have to do an injection if their INR dips below a certain level, some also self test alongside their Warfarin, to keep an eye between INR clinic visits etc, however not everybody is suitable for this, KellyInTexas is an absolute expert patient regarding this. I have never had Warfarin only Fragmin injections for periods of time. It is crucial that you have the right specialist who understands all of this. MaryF
I’ve been on warfarin for 20 years, I’ve had my ups and downs with DVTs strokes and the odd clot in my lung. My INR is now set at 3-4.5 if it’s goes under 3 then I inject with Fragmin this seems to work well.
As for the newer anticoagulants I’d love to try them but have been told by the team at St Thomas and my local haematologist that I’m not suitable for them. But do remember this is my personal position and everyone is different. What suits one may not suit another.
J
Ive had a few strokes myself i was not happy on the coumadin and asked docs to switch me to lovenox aka enoxaparin and similar to fragminE. I inject myself every twelve hours and feel much more at ease with this. If your husband has dexterity problems this may be an issue for him to do snd you will have to help him. Best regards. Oops, The dose is 1 mg per kg of body weight every twelve hours!
I had two strokes on Warfarin & low dose aspirin. For 13 years, I had a good run. My son was having many issues at school and I was so focused on him, I neglected to get my INR checked for months. Needless to say, despite taking my daily warfarin, I had been sub therapeutic for some time. Stroke #1 May 2018 caused by a clot. This past January, I was taking antibiotics. My hematologist's office called to say my INR was 4.1. I was on my last pill for the round of antibiotics. My INR had gone as high as 6.1 since getting diagnosed in 2006 with APS. Stroke #2 February 4, 2019 caused by a bleed. I am no longer taking warfarin, as it's too risky for another bleed in the brain. My doctors have put me on Lovenox injections (heparin) twice a day instead. They can be out of the body in about 12 hours. I now monitor my blood levels with a test called Anti Xa. The neuro surgeon didn't want me put on any blood thinners post stroke but the hematology team advocated for me (and my mechanical mitral valve & APS). Were all of your husband's strokes caused by clots?
All his strokes were caused by clots. We checked for 3 years with Coaguchek self testing and that was all over the place and since then check veinous weekly. We try to stay between 3 and 4 INR. The first stroke was when he was diagnosed and put on warfarin. 2nd stroke he had cut himself and was bleeding badly and GP checked INR and it was 5.2 (still finger poke at that time... Might have only been in 3s veinous. He wanted him to go off for 2or 3 days. He only went off one day and nervously took 5 my the next night worrying about being off. The next day had a stroke with INR in ER of 1.9.
The advise given by the Hematologist to hold the warfarin was horrific. We are almost never to actually hold a dose for exactly this reason- and this is exactly why we must have an APS specialty Hematologist.
I was in exactly these shoes but I chose not to withhold the dose. ( I was also told to withhold for three days, then resume on the third day at 1/2 the standard dose. )
It was a complicated story, I had influenza, my INR was up from several doses Tylenol.
I was getting over it, and knew the Tylenol would be leaving my system.
I had some something similar the year before, held one day, under another heme, and developed a DVT and was hospitalized.
Fortunately, I log every day my warfarin dose, make notes of all meds, and reactions.
I could go back and track, and learn my body.
I told the nurse I would just reduce by half for one day, and I should make a , “ soft landing” with INR, which is exactly what happened. Of course it depends on how high the INR is- and that’s patient to patient dependent. I had already a plan in place with my APS Specialist, which was not this guy. He just did not respect it.
The Hematologist dismissed me from his practice! Even though I handled It expertly. Had my log from the last year.
My other doctors were very happy to have him out of the picture. He was very good- just didn’t understand APS.
I had an APS Specialist prior to him tell me to never hold, but unfortunately he passed away.
Be sure to make a monthly chart of all you do. ( including increasing or decreasing dietary greens for micro adjustments. Discuss this with your Hematologist carefully first.
Would you like for me to post the ,” flow chart” I have created for myself for you to follow? You can use it for a guide only.
the advice to hold warfarin really depends on the previous dosages and previous INR's ,to assess whether the INR is likely to fall or increase over the next few days and if any other "one off" or new med;s etc have affected it. Whatever, withholding 2-3 doses is excessive for an INR of 5.2 especially in someone APLS and a history of strokes.
Thank you for your incredibly well meaning intentions , but I can tell from reading your responses that you yourself seem to have not personally gone through the struggles of APS so I looked up your profile.
Are you personally on warfarin therapy currently?
Have you ever personally been on warfarin?
Have you ever been on warfarin for the diagnosis of APS?
( because it’s completely a different animal all together, being on warfarin for APS ,than being on warfarin for say, A-Fib..)
Correct me if I am wrong, or if your health status has changed , but you have a different hyper coaguable state other than APS. ( your diagnosis seems to bring its own set of very difficult challenges, including neuropathy and imbalance. ) I think my sister might have what you have actually... I may pick your brain on this if you don’t mind- I’ll private message you for your help.
We struggle to be allowed to manage our own INR’s. The APS antibodies cause our inr’s To be extremely labile. It can change from day to day despite extreme adherence and steadfast consistency in same value of vitamin k intake of our daily diet.
To suggest that alcohol consumption could be the source of a labile INR usually implies that a patient is either brand new to the forum, or perhaps had absolutely no help from a registered dietitian in the hospital, or from specialists. In the USA we get excellent council on both as protocol per something along what you would call your NICE guidelines.
If this were a very young 20 something year old or late teens with a mild case... I would have more of a concern about dietary/ libation adherence, despite APS dietary counseling.
You are absolutely correct about the RAPS/ TRAPS trial.
There are some instances where it’s used. ( with careful vetting.)
For example, I was trialed on Apixiban knowing it had been stopped early. I’m not alone in this.
If you are curious, look up the ASTRO APS trial out of Utah. ( spoiler alert! It was pulled early also.) This is not the trial I was in.
I was warned not to enroll in this particular trial by my American APS Specialist, as it was not being dosed high enough for APS patients. She dosed my much higher, but yes, as you might have guessed I clotted through her higher dose quickly. ( with aspirin.) This is unusual- most of her APS patients do well with her formula.
It depends on dose, and specialist, and country and protocol.
Most importantly... that why we are saying on here ad nauseam... a patient must have an APS SPECIALIST. They will have access to these trial outcomes.
Case in point, my APS Specialist knew I might fail her Apixiban high dose ( 10 mg twice daily dose) - That was my particular formula- so she had- a back up plan in place. Enoxaparin . I clotted through that also.
The reason we did these two experiments is because I clot through warfarin.
Micro adjustments ( very micro) help keep the huge ship on course.
Knowing the INR ( by vein) often helps us make micro adjustments to dietary greens
Instead of adjusting warfarin. It hits within 15 hours.
I hope you have not tested positive for APS.
Very importantly, I wish you every success with the hyper coaguable condition you have. I noted you take clopidogrel for it. I hope it is controlling it for you reasonably well.
Keep well! Keep strong! And as a patient, can I just say...
Thank you for being a nurse. Your years of obvious service to humanity were and continue to be of invaluable importance and impact. ❤️
You seem to have all the answers Kelly.
Nope-never been on Clopidogrel /warfarin and don't have a hypercoaguable condition either.
Have a great day.
I am pleased to say that KellyInTexas really does know her stuff, and like all of us administrators, we work very carefully on here to provide a safe forum, making it clear we are not dishing out medical advice as if medically trained, We give our time freely to help others as we all have Hughes Syndrome/APS and understand how difficult it is for people at times to find the right consultant and adequate medical care. MaryF
I would love a copy of your flow chart. I have kept records for many years of his daily warfarin dosages and weekly INRs. I have not kept close records of what he eats as we are very careful of greens, but now with new diagnosis of stage 3b chronic kidney disease last year, we eat something green daily (salad/ cole slaw) and up the warfarin dosage to keep him 3.5-4. He is very stable most weeks, but also chooses to have testosterone shots now and that causes INR to increase and it has been tricky working around that. We had not been extremely alarmed at a mid to high 2s INR until the last stroke at 2.5 so take care if it drops in the low 3s. Thanks so much for your input.
I will post a blank one. This way you can ( any one can) replicate it.
I will also post one that I have filled out so you can see what a typical month look like for me.
I’m going to ( in my post title ) I parenthesis put for Granny4 him so you will find It easily.
It may be blurry. It’s the problem with this particular HU ( Health unlocked) platform.
Now before you see this chart, I need to tell you that my INR has been set unusually high by my American team.
It’s set at 5.0. - 5.5
That is because I have demonstrated DVT’s by Doppler scan at 4.8 with no dips.
This is why I’m on Rituximab. If clotted through that also.
I am to inject LMWH at 3.5 ( ish) or even close to 4.0a but only if symptomatic. And only a small amount.
I weigh between 112-114 pounds. I use Enoxaparin . ( Lovenox USA/ Clexane UK)
Must be very challenging with testosterone- I’m having similar challenges with steroids- ( solumedrol.) i Mark it “dose change “ Column.
Keeping your Inr in range is no guarantee of no strokes, I managed to have a stroke with an Inr of 4. The effects of the stroke were somewhat reduced but it still happened. They then added Aspirin to the Warfarin and I had internal bleeding. Spent the last year on Clexane and now being told to go back on Warfarin with a lower range than before so risking stroke again.
I wish you all the best. This sound very unusual and difficult. Those clotting cascades can sure get complicated...
Hi there, reading everyone’s experiences on here there does seem to be real difficulty knowing what is right and it obviously depends on the patient.
I am commenting really because I am on Apixaban, twice daily after having a second clot/ pulmonary embolism. It is 3.5 years in total since my clotting adventures started but although I was told that I could still get a clot, it tends to be only very sick people who that happens to, so I am sort of reassured. As far as I know I am not experiencing any clots but as they cannot test to see what is happening in the blood it does feel a little like crossing your fingers and hoping the drugs work.
There is an antidote to Apixaban, which there isn’t for Rivaroxiban. I would say that the Apixaban makes life a lot easier than if you are taking Warfarin. You don’t have to worry about what you are eating and no blood tests. No one can advise you in this situation other than your Doctors and it seems like it all has to be very carefully managed if the tablets are changed. I just wanted to say that for me, the Apixaban seems to work and is easy to manage. The NOAC’s as they call them, have been around for a good few years now so there should be some evidence of how effective they are in different situations.
Best wishes,
Sue_b
I think the new drug is an antidote for both Apixaban and Rivaroxaban.
I understand that people find the newer anticoagulants more convenient that warfarin, but it's important that at least once a year patients are reviewed and asked about any bleeding events, changes in their general health that may increase bleeding risk plus any thrombotic events.
Also weighed andblood samples taken to check for anaemia and measure kidney function as the dosage of Apixaban is based on weight and kidney function. As people age, or due to other illnesses, their kidney function tends to decline and an Apixaban dosage reduction may be required.
At the end of the day they're still anticoagulated and Apixaban isn't quite the "one size fits all" that people are often lead to believe.
That's interesting, I am only on 2.5 twice a day and I'm 18 stone.
Hello Sue,
I hope you are doing well.
It seems you are!
If you and your doctors feel fairly confident that you indeed do not have APS, then perhaps Apixiban could very well be the right choice for you,
At the risk of temporarily going off piste, I will tell you why my Hematologist in Texas agreed to high dose Apixiban in my particular case.
He was one of the lead scientists on the trials for Rivaroxaban when it was first emerging. He said it was alphabet soup phase. ( assigned numbers and letters ; not yet a name.)
He’s been closely following noacs/ DOACS ever since.
He said that rivaroxaban and Apixiban are virtually the same... up until they are not - and then Apixiban out performs the rivaroxaban in , “horse power “.
He said to think of them as two cars side by side- but one is a high powered high performance race car- the other is not. They both seem identical at low speeds. It’s not until a high speed is needed that the Apixiban is set apart in its ability to out perform.
Interesting 
Hi SueB, I’m on apixiban after more than a decade of struggling with warfarin (no clotting events while on it though, thank heavens). I’m triple positive with high titres, and I take 5 mg twice a day. My APS specialist said the studies done to gain FDA approval were done using 25 mg, twice a day. They found that much lower doses were just as effective. The primary difference between apixiban and rivaroxiban is dosing - once a day vs twice a day. Maybe talk to your doc if you are concerned about your dose or if you’re having other symptoms.
Thanks Tofino5, no symptoms that I am aware of but who really knows what is going on, small scale. That is one of the things that has always concerned me about NOAC's, no way of testing whether they are doing the necessary job.
Sue, the recommended dose for the long term prophylaxis of DVT/PE is 2.5 mg twice daily, however some consultants prefer 5 mg twice daily if someone is at higher risk of VTE. The recommended dose for prevention of stroke in A Fib is 5 mg daily .
Whether the recommended dose is 5 mg bd or 2.5 mg, the drug info for Apixaban recommends halving the 5 mg dose if certain criteria related to age, weight and kidney function are met. They recommend that if the recommended dose is 2.5 mg and those criteria are met, then Apixaban should be avoided.
Apixaban is excreted via the kidneys , so if someone has impaired then the effects of Apixaban can be enhanced as it isn't excreted as efficiently. I believe it's metabolised via the liver, so similarly if someone has impaired liver funtion the effects can be greater.
This is one of the disadvantages of the DOACS as , unlike warfarin, there isn't really a blood test that will tell us about the degree to which they're anticoagulating someone. That's what I eluded to when I said they aren't "one size fits all" .
I so appreciate everyone's input. We are praying about every detail as we weigh the pros and cons and details of blood test results. Bless you all and I pray for all of you in your journeys as well...
Hi grammy4him,
Sorry your husband has had several strokes on warfarin.
Are you in the UK?
When you say that the GP is letting you manage his warfarin, do you mean that you adjust the warfarin dosage yourselves?
It's important to know what percentage of the time your husband's INR is within range as if it's only in range 60% of the time or less ,then he's it far higher risk of stroke than if, for example, it was in range 80% of the time
and I assume his range is 3.0-4.0.
Your husband would probably benefit from having his anticoagulation managed by an anticoagulation service at a local hospital or pharmacy. They have computerised anticoagulant records which can provide such statistics, plus the staff (usually specialist nurses or specially trained pharmacists) know far more about adjusting dosages etc etc.
One of the worst things you can do with warfarin is change the dosage too frequently as it takes 3 days for a dose change to reflect in the INR.
Do you know why his INR drops below the target range? Is it related to his diet or alcohol intake? As you know, warfarin is sensitive to changes in medication, some foods and alcohol (to name a few) but a good anticoagulation service would be able to assess why the INR has been dropping below range and stabilise his INR.
If they're hopsital based then they're usually loosely overseen by a consultant haematolgist who they'll seek advice from if they really struggle to keep the INR in range.
Once his anticoagulation is stable then they should be able to manage it through shoulder surgery,
What concerns me about the Haematologist recommending that your husband changes to one of the newer anticoagulants (DOACS) is this, from the UK government drug safety agency in June this year.
This is just one paragraph
"The level of evidence for an increased risk of recurrent thrombotic events in patients with antiphospholipid syndrome differs among DOACs (see below for information for each medicine). However, there is not enough evidence that any DOAC offers sufficient protection in patients diagnosed with established antiphospholipid syndrome, particularly in patients at the highest risk for thromboembolic events (those who test positive for all 3 antiphospholipid tests – lupus anticoagulant, anticardiolipin antibodies, and anti-beta 2 glycoprotein I antibodies). Changes are therefore being made to the product information for these medicines to advise that use of DOACs in these patients with antiphospholipid syndrome is not recommended"
This is the web address for the full drug safety alert. You'll have to copy and paste it into your address bar, or just google "DOACS antiphospholipid syndrome" and it comes up in the search results second from the top.
gov.uk/drug-safety-update/d...
Just a thought, but what does your husbands Stroke Consultant say about anticoagulation?
We have worked with a GP over these years and just now seeking someone more familiar with APS. In Nebraska. The winter months we have his INR checked at an anticoagulation clinic at hospital near by. We are not completely on our own. He is typically stable taking 7mg 5 times and 6mg 2 days a week. We adjust 1mg here and there depending on too high or too low and discuss it with Dr. /nurse and they keep records of what we are doing. Thanks for the info and links.
It was a GP that wanted him to go off for a few days and we did not follow that advice. We went off only one day and took 5mg the next night. We try to keep INR between 3.5-4. The new hematologist did a new blood work up for APS and we meet with him next week. He has been on warfarin almost 20 years. Only the last 4 years have we realized that the CoAgUchek does not work for him. It was not consistent high as we had thought.. It was all over the place. Vein draw now these last years. Another thing we found that changes INR are testosterone shots.
I am grateful to all of you for your input. We have not met anyone with APS and I am grateful to "meet" all of you. My cute farmer is still hard working and not a complainer. He does not let his health get him down. He trusts the Lord for each day and is grateful after 3 strokes, he has had very little lasting effects. It has chipped away at his short term memory some, but he is also almost 68 years old. His biggest complaint these days is the torn rotator in right shoulder (right handed) and the reason we are contemplating surgery for that. Difficult decisions...and his decision to make ....along with surgeon and blood Dr.
I just want the best for him........and all of you!!
It's good that he is still able to do his work, although I can empathise in a way with his rotator cuff injury. My father who's now 87 fell 2 years ago and broke his right hip and also tore 2 tendons in his right shoulder, so he was in a real pickle. Strangely enough, he was diagnosed with A Fib' at the same time and started on Apixaban. Thankfully his shoulder has improved somewhat with physio and he's gone from walking with a rollator when he was discharged to managing with 1 stick and he also drives again.
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