hi,
I saw the APS specialist today who is retesting me for APS but believes i might have Serro negative APS.
He was talking about the different medications and due to my age is reticent to put me on Warfarin or Heparin. He wants to keep me on asprin but also treat me with hydroxychoroquine and chlopidogrel (plavix)
What were peoples symptoms and has anyone found that they've found relief without anti coagulants?
Thank you 😊
I started on Aspirin and clopidogrel and stayed on it for a year before being switched to warfarin, I was fine.
What was the reason for them swapping you onto warfarin?
I was put on aspirin and clopidogrel following a stroke, once diagnosed with Aps I was transferred onto warfarin. Currently on Clexane following internal bleeding but will no doubt end up back on Warfarin. Usually they wont put you on warfarin until you test positive for aps as warfarin interferes with the test.
I am on Aspirin, I have not had a clot for years and years, but I do follow a specific diet, which is not for everybody, I am also on Thyroid medication also Low Dose Naltrexone. I hope your consultant will continue to monitor you. We do have a seronegative section on our charity website: ghic.world/hughes-syndrome/ Also to be clear, I was seronegative for years as were my children, but that is no the case now, so results can come and go. MaryF
doctor wants to keep a very close eye on me. Got to wait to see if I'm APS positive or he's going to treat me as serro negative for three months and see ehat happens.
He doesn't want to put me on warfarin ir heparin as due to my age and being a figure skater, I'd have major issues
also what diet do you follow? Might be worth me looking at
Dear SOTI,
Please look into a low histimine diet. It is tied into MAST cell activation syndrome. Dr Lawrence Afrin ( NYC/ Hematologist) has written a book called never bet against occam. Heparin ( produced in mast cells in mammals) can become dis regulated. It’s a very complicated discussion and best left for specialists, but my Specialist Rheumatoligist who trained under doctor Hughes and is now in the USA told me 1/2 of her patients do have mast cell activation syndrome.
This is one reason why many of us do better without breads.
Try to avoid the known triggers many normal migrain sufferers known about. ( it’s actually a form of mast cell!) red wine, chocolate... but add to the list for us. The histamines as well. No ages foods. The produce histimine. No hard cheeeses. No fermented foods. No vinegar/ no hops.
No pineapple! ( not sure why...)
No sausages. No processed meats. No canned foods. Only FRESH or fresh frozen foods.
Careful with fish. I only eat fresh salmon.
No left overs in fridge. Freeze immediately.
No storing in plastic containers. Only glass.
There’s your start.
I’d like to also tell you, and I do apologize, I only now noticed your post question includes a qualifier for only those who have not yet begun anticoagulation.
That does not fit for me, as I am on high intensity anticoagulation.
However, this does not change your question entirely regarding diet. Only where certain Amounts of Vit k could be concerned when on warfarin. but where that would be concerned, the name of the game is consistency.
There are a few vegetables to consider when implementing a low histimine diet. You will need to google “ low histimine diet.”
My diet is gluten free, but with five brazil nuts added in for daily Selenium. I eat a lot of oily fish and take oily fish pills, basically my diet is fully Mediterranean, plus lots of supplements and exercise, (at least one hour every day). I embarked on this at a young age as I was worried about having another clot, however this is not for everybody, you need to carry on working with your GP and consultant and make sure you are correctly monitored. Should I have another clot I would be put on anticoagulants. MaryF
Kelly what is occam standng for, im not familiar with this? Thanks
Occams Theory:
Simply stated:
Given that the variables at play are equal ( people always mistakenly leave that out leave that
Out) the simplest explanation is usually the best one
So logic i suppose
Any advice please 
Still not anti coagulated after 6 months!!! Soooo distressed! 
COVID-19 treatment options for those taking Warfarin
Elevated Red cells and APS
