Stopped anticoagulants after 16 years

[Jlbwise]

I have been APL positive (I believe all 3 of the factors) since 2002. At least, that's when they found it. I have white matter lesions on my brain from the clotting flowing through my PFO (small leaky valve in my heart). lucky I'm not dead. I had to find a new rhemutologist as mine retired. I had full blood work a few months ago and nothing - zippo- no APL. So.....they took me off the warfarin and plaqueneil. It's been about a month. I'm not so sure that's a good idea. I am starting to not feel so good. Weird headaches, trouble speaking...anybody have any thoughts on this? in the least maybe I get blood work again? I'm pretty upset about the medical world. nobody follows through. you get different views from different doctors. I'm a little worried.

[ndstephens49]

Hi. When I needed a pacemaker in 2008 the idiot doctor took me off coumadin cold—no lovenox bridge. I’ve been on Coumadin since 1996. I argued with him but he said I was an emergency and I HAD to stop. Told him to call my hematologist but he refused and he scared me. I KNEW I shouldn’t stop Coumadin.

11 days after the pacemaker installed and Coumadin resumed after 3 days with no anticoagulation, I developed a clot in left foot that ruptured and my foot doubled in size and I got compartment syndrome.

I also had to have two surgeries on foot, got MRSA infection in foot, spent one week in local hospital. When I was discharged locally my foot still had a spreading cellulitis.

My husband and I drove immediately 5 hours to cleveland Clinic where I was admitted for eight days thru the ER. I was on vancomycin by PPIC line for six weeks and it took 6 months to heal.

If something feels wrong, it most likely is.

Would you believe that in the 10 years since this happened I’ve had Coumadin Clinic Nurses who tried to stop my Coumadin for 2-3 days as my INR was slightly high. I refused and they threatened to prevent me from getting a new INR meter. I simply said absolutely not and they were so mad. They even suggested I should go on Xarelto if I wasn’t going to ‘mind them’ like I was a six year old.

That’s the last time I went there.

Nancy in West Virginia

I would send you a horrifying photo of my foot but I don’t know how.

[Jlbwise in reply to ndstephens49]

terrible story. i hope you are doing much better now.

[Jillymo]

Hi Hun,

It is sad but not all Drs and Consultants understand this wretched illness.

Please take note of APsnotFab's advice and get back on your medication asap. I fully understand what your saying when you referred to - nobody follows through. you get different views from different doctors.

You have Antphosolipid Syndrome and in need of your blood thinning medication. You need to gather some info......plenty on here and wave it in front of the consultants nose that has withdrawn your medication.

Once Diagnosed with APs it does not go away.

Like you I am sick of dealing with Gps ext that do not understand the illness. Insist your medication is reinstated.

[Jlbwise]

thank you for your reply. I have called into the doctor today. as I am not sure I can just start taking the warfarin as you know that is a maintenance drug and would need the lovenox first to get therapeutic. so i dont want to just start taking the meds. but i will seek help right away. thank you.

[Jlbwise]

i am going to. but i need consultation on how to do that. need lovenox first i presume.....

[daisyd]

Sorry haven’t had time to read all

The replies, please see someone today you really need to be covered by something? Clexane and then Warfarin until INR in range, but whatever they shouldn’t have taken you off anticoagulant

[Jlbwise in reply to daisyd]

going to follow the advise above until I speak with the doctor. can you imagine that you cant get these doctors to call you back. what----do you have to have a stroke for them to pay attention?

[Jlbwise]

I am in the US. I spoke with the rheumatologist the other night. she finally called. was supposed to call me back yesterday...no call. I think I am going to do the baby asprin and HCQ. That was what I thought as well. better than nothing. thanks so much

[MaryF Administrator]

Hi antibodies and various results come and go, I am an example of that, I tested negative for Lupus for years and also for Hughes Syndrome/APS. However I pass most of the tests all the time now. You need a specialist who understands the condition, we have them listed under pinned posts on the right of the forum, or off the charity website: ghic.world/ You need to be firm with the medical profession over this, and explain that you will hold them personally responsible should you become ill with your medication removed like that. MaryF