I am new here but not new to APS. I was diagnosed with Protein S deficiency in 2008. My doctor put me on a baby aspirin a day.
I had three miscarriages after two healthy children in 2010. In 2012 I had a pulmonary embolism and bloodwork showed APS. I was placed on Coumadin with a recommended INR of 2.5-3.5
I had a difficult time remaining therapeutic on Coumadin and ranged from 1.0-6.5 and my hematologist switched me to Eliquis 2 years ago.
I recently visited the Mayo Clinic for a different health issue and the doctor I saw told me that Eliquis is not the best med for APS. He sent me to a vascular doctor there who recommended Coumadin.
When I returned home and saw my local hematologist he said that he wouldn’t recommend switching back as I couldn’t be kept therapeutic.
He said he would write the prescription but he did t think it was a good idea
I was curious if any of you have dealt with a similar issue and how it could be resolved?
Any recommendations would be appreciated!
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jsb0410
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I am on Coumadin diagnosed with APS nearly twenty yars ago. I had to get my own fingerstick machine to help stay within range. Some do not like to test themselves but I have the same machine that every doctor's office and hospital uses. I have never had a problem with inconsistent readings. I had to fight to get my doctor to write me the script for the machine but I consider it a life-saver.
Hi thank you for answering and I hope you are doing well! I had my own monitor for about 3 years and it was much easier than having to go to the doctor’s office. I had a fabulous hematologist who asked me to text him results and he would dose me himself. I did pretty well during this time. Unfortunately my doctor retired and my new doctor is very different. The nurses dosed and as it is mainly an oncology practice I don’t think they were very practiced.
If I can find a way to switch back to Coumadin I would definitely want a monitor again it was fantastic!
Hi Thanks for your response! I was never consistent with K as I was pretty nervous about eating it (I know that sounds silly)
I mentioned this to my doctor trying to offer an explanation about why I might not have been able to take Coumadin but he said “that isn’t it” which didn’t sound totally right to me.
I am so sorry that you had problems while on Warfarin.
My doctor never mentioned back up injections and I would be sub therapeutic all the time.
I don’t know if I should find a doctor more willing to try different measures.
What did your bloodwork show? There are 3 antibodies that can be positive to APS and if you had Lupus Anticoagulant (one of the 3 antibodies) positive it can be a little difficult to keep the INR in place.
As nubianprof63 says, you should have a fingerstickmachine of your own. Also as Holly Hesky says, a backup plan with Fragminshots when the INR is too low.
I have selftested in Sweden for 7 years now. It may be possible if you have a Specialist behind your back who is eager to help you with APS. You should not have an INR of 2.5 as that is too low INR. Most of us need an INR of 3.5 - 4.0 to feel without issues and feel good.
Yes, it is a fight for us to have this illness. So many ignorant Doctors around us who do not know we have too thick blood that has to be stable and correctly anticoagulated.
Hope you have the forse to take that fight for your life. Also read "Sticky Blood Explained" by Kay Thackray and read as much as you can to educate yourself, so you know what you are talking about, when you see your Specialist.
Hi thank you so much for your response! I am not positive for Lupus Anticoagulant (at this moment but I was previously) but for Anticardiolipin, Beta 2 Glycoprotein, Phosphatidylerine, DRVVT,Protein S and Antithrombin III
The finger stick machine was super helpful when I had it (for about three years)
I was hopeful after my visit to Mayo that perhaps my hematologist would be more positive.
However he was pretty irritated about me bringing it up.
He is not an APS specialist and I personally have never seen one.
I am concerned that his nurses were not dosing me appropriately due to that office’s lack of experience or exposure to APS.
I like the idea of having the heparin as a backup if INR is low and that has never been suggested to me before.
I truly appreciate your help and the book suggestion!
You say you were previosly positive to Lupus Anticoagulant. Then you are probabley still positive to it but after taking Warfarin they do not test people for that antibody anymore as it can give false answers.
Then you are triple positive especially if you took Lupus Anticoagulant several times and it was positive. Can you remember if it was after you started Warfarin that they did not take the antibodies?
I had all the three positive in high titres for a rather long period of time before I finally started Warfarin. At that time, I only knew Warfarin as "rat poisson" ........, stupid as it has been my lifesaver here in Stockholm.
It is only the Lupus Anticoagulant that is unreliable when using Warfarin.
I test those two others twice every year here in Sweden. It took a long time after my diagnose to start Warfarin (sorry for that) as I had so many neurological symptoms and I was i contact with a chief-Neurologist who also suggested me to try Warfarin but I did not like the idea as I told you above.
Hi! I think you should look to find a hematologist more specialized in APS. Easier said than done I know. I looked up their bios online and found one that studied clotting disorders. I’ve seen some that specifically state their interest in APS or other blood clotting disorders.
If you call a clinic they will tell you that of course they all understand it because they are hematologists but that’s just not true.
This is your life! You just have to be your own advocate and sometimes that means opening another door and then another to find that Dr you feel comfortable with.
Thank you so much for this I really appreciate your help! I don’t know why I have been so complacent about this for so long. I had just gotten used to this doctor even though it is not typical of me to put up with type of attitude from physicians. I agree with you I will see what I can do about finding a specialist. It can be hard where I live but I have traveled for healthcare before so I am willing to go somewhere for care.
You’re welcome. I think we feel guilty for changing? But these Drs do not have to live are life or ultimately live with the consequences. I know it’s such a long road but it’s worth it!
You may need to talk to your local doctor about Heparin injections as a back up plan for when your INR drops too low, many on here have to do this if their Warfarin/Coumadin cause an unstable INR. Some also back this up by self testing at home, alongside regular blood draws at their local clinic. I hope you get some swift answers. MaryF
I repeat myself here regarding doctor paranoia: most docs (even including hematologists!) have only experienced or seen the consequences of a major bleed by patients on warfarin, aka coumadin. So, they have what I call "warfarin paranoia." But doctors experienced in treating APS (that word "experienced" is crucial!) know that most, if not all, of those accidental warfarin bleeds are from patients who take warfarin because they have a sticky SPOT in their circulatory system -- like an a fib, or an artificial heart valve, or a stent, etc. We take warfarin because we have a whole STICKY CIRCULATORY SYSTEM!
Which leads me to ask; how many APS patients has your local hematologist treated? INR instability on warfarin is a very real thing! The one issue wherein warfarin is MORE problematic for us APSers is that instabiity. Which is why using an injectable is sometimes our best option. I know it sounds intimidating, but it is actually easy peasy. I bridged before my 2 joint replacement surgeries and initially I was scared. But administering the shot (APS not fab gives great advice) was easy and I GOT TO EAT WHATEVER I WANTED for a few days. GINGER, LIVER AND ONIONS, whatever I wanted. I"m back on warfarin now but i kinda yearn for those injectable days. Oh well.
I am triple positive APS and when I was on Warfarin (Coumadin) my INR went up and down like a yo-yo despite keeping a good eye on what I was eating. I had frequent vein blood tests at hospital to make sure my CoaguCheck was giving me correct result and I was self testing and self dosing after giving up the absolute hopeless local clinic who had no understanding of APS. Because of the erratic INR, my haematology clinic at St. Thomas Hospital decided in the end I was going to be on Fragmin injections for life - no more Warfarin. This was in early 2011 and I have now been injecting for nearly 9 years. Fragmin was last year switched to Fondaparinux which has no risk of osteoporosis since I already have osteopenia.
Incidentally - for other readers from UK who might be interested in Fondaparinux - my GP surgery refuse to pay for it because the injections are so expensive. Instead St Thomas Hospital is paying for it, they deliver from their pharmacy to me every 3 months - an unusual arrangement, doesn’t make any difference to me who lives in London, but might to people outside London.
If you have an erratic INR it would be useful to discuss with your haematologist moving on to a type of LMH and you will soon get used to your daily injection - it’s no bother at all really, just inject REALLY slowly and don’t rub afterwards, I just put a light pressure on.
Just forgot to comment on your point about Eliquis...it is called Apixaban here in UK and is similar to Rivaroxaban (tablets) which I have also tried for a short period - and didn’t get on with at all - had a migraine every single day for 22 days before giving up and went back on to Fragmin. Both products and similar DOACs have since been withdrawn for triple positive APS patients here in UK but can be used with caution to single positive APS patients.
Thank you so much for sharing this. I have quite a few clotting factors and I am surprised my doctor even suggested the Eliquis (the Mayo doctors were surprised as well)
I am sorry that you had a bad experience with that class of drug
I have been “fine” on it but it is very frightening that it could not be offering enough protection
A Doctor who is working with people like you and me and who KNOWS what sort of anticoagulation we need and also knows the problems with erratic INRs etc (if taking Warfarin). It is often a Rheumatologist or a Hematologist.
Doctors are just ordinary people and do not like to work with something that they do not know. APS is such a rare and unusual illness. Difficult to diagnose and engaging several organs and going hand in hand with other autoimmun illnesses very often.
Unfortunately neither my rheumatologist or hematologist specializes in APS. I called the closest major medical center and they only have 1 hematologist who specializes in any clotting issues and the waiting list is 9 months.
I agree about that doctors don’t like dealing with “different/rare” diagnoses.
I am going to make some phone calls this week to see about traveling for care
You will need to discuss it with your haematologist, as I have understood it there is a slight (theoretical) risk of osteoporosis with Fragmin and since I was using it long term I was switched to Fondaparinux. I guess for patients using Fragmin for bridging or only weeks or a few months it will perhaps be less of a risk - but ask your haematologist.
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