Sticky Blood-Hughes Syndrome Support
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I am on warfarin but do not self test.

With all thats occurring with Ebola at the moment and witha known case making it to the USA I asked today if there were any plans in place for patients on warfarin who do not self test, in case Ebola should ever make it to our shores.

Seems there is no obvious plan at the moment.

Maybe i will need to ensure I have some Asprin handy.

13 Replies

I'm not sure I understand. What is the relationship between warfarin and ebola reaching the USA?


If ebola hits then it may be unwise to unnecessarily attend areas containing large numbers of sick people

If ebola has made it to the US it will probably also get to the UK at some point.

I was wondering similar things in relation to how dialysis patients may still be successfully treated.


So how will aspirin help? They work in different ways.

I agree though that the health authorities/ government need to work out a plan should any pandemic hit their country.


Well with something like aspirin there would be no need to attend any centre for checking as there would be no inr to check


I understand your reasoning but aspirin can't replace warfarin ...they work in different ways. Aspirin is not a substitute for warfarin. Some form of heparin would be a suitable substitute.


When I first start anti coagulant therapy I was started on warfarin and aspirin together. I stopped taking aspirin after losing my hearing as it is potentially ototoxic.

But if there was a pandemic then options and priorities may need to be reconsidered in light of new events. I thought that aspirin might provide an alternative. If not somebody needs to come up with some guidelines


I dont think that ebola is going to evolve into something that threatons the populations of developed, northern hemisphere countries. I have shared your concerns about how to manage my INR in case of a collapse in infastructure - such as an asteroid hitting us? -- but this is not something I stay up nights worrying about.


HI, who is managing your care? They will reassure about what you should or should not be taking. I know the newspapers are whipping up Ebola and yes it is nasty, but currently this is not considered to be a pandemic and is being contained. I understand we all worry at times due to the way our autoimmune conditions compromise us, but my advice is so seek some reassurance of somebody you trust as unnecessary stress could make you feel an awful lot worse. Low dose Aspirin has not caused myself or any or my relatives any problems and of course there are alternatives in terms of antiplatelet therapies.




I totally agree with what my colleague, Mary, has advised you.



Hi, I started 2002 with baby-Aspirin and it helped for some years but then I got worse and had to switch to warfarin instead. I selftest since almost 2 years.

You can NEVER stop warfarin without a similar drug that is working like warfarin does, like for instance LMWHeparin or Fragmin etc. Already said by tassie.

I would suggest you try to get a selftesting machine to keep your INR in range. It is very frightening with the Ebola but I think it is a greater possibility that I die from bleeding because of APS (if I think of myself).

I hope they can stop the Ebola but they must do something now!

Best wishes from Kerstin


Work that I once did involved making plans for emergency situations and I am entirely confident that appropriate plans will be in place in the maority of first world countries. I doubt that warfarin users will have their own plans but will be part of the arrangements for a wider group with needs for regular medical attention.


You know that I have had dreams where I wake up in a prison camp and ask the guards for my Warfarin and they laugh at me. I really wonder what will happen to us if an "end of the world" type of event were to take place. When I watch The Walking Dead, or Under The Dome, I wonder what would happen when all of the meds run out. I guess it's not a good thing to concern ourselves with the unknowns. It can become counter-productive. Ebola is a real threat though. I don't see people on blood thinners surviving a disease that cause wide-spread bleeding. It's a Hemorrhagic Fever. Perhaps cessation of warfarin will allow us APS patients to survive. I don't know. I guess we'll have to cross that bridge when it comes. Until then, I'm not going to dwell on it that much.


Selenium Deficiency Could Potentially Play an Important Role in Ebola Lethality

Here's yet another factor that could play an important role in the Ebola outbreak: selenium deficiency. The documented relationship between low selenium status and impaired immunity in relation to Ebola goes back to 1995. Intriguing evidence suggests that the lethal hemorrhaging associated with the Ebola virus may be influenced by a lack of selenium...

According to Dr. Gary Gordan, adults need at least 400 micrograms (mcg) of selenium per day, but if the virus is making seleno-proteins—which Ebola is thought to do—you may need several times that amount. The documentation I'm referring to was published in the Journal of Orthomolecular Medicine in 1995,15 and reads in part:

"The expression of this hypothetical protein could impose an unprecedented selenium demand upon the host, potentially leading to severe lipid peroxidation and cell membrane destruction. This could also contribute to the characteristic hemorrhaging caused by intravascular blood clotting, due to the thrombotic effect of selenium (Se) deficiency. The possibility that this gene might contribute to the extreme pathogenicity of the Zaire strain of Ebola virus by this mechanism is also consistent with the observation that this potential selenoprotein gene is not present in the Ebola Reston strain, which was not pathogenic in humans...

It is very well documented that selenium plays a significant role in the regulation of blood clotting via its effects on the thromboxane/prostacyclin ratio. Selenium has an anti-clotting effect, whereas selenium deficiency has a pro-clotting or thrombotic effect. Selenium deficiency has been associated with thrombosis and even hemorrhaging, which has been documented in a number of animals with severe selenium deficiency... but is almost never seen in humans, probably because such an extreme selenium deficiency is rarely attained due to the diversity of human diets.

Thus, the possibility that a rapid depletion of selenium due to the formation of viral selenoproteins could be a factor contributing to the severity of the hemorrhagic symptoms is mechanistically very feasible. Our analysis suggests that severe Ebola infections could produce an artificial and extreme Se depletion, resulting in extensive cellular damage due to lipid peroxidation, combined with enhanced thrombosis.

This could also contribute to the associated immune deficiency that has been observed in Ebola infections.

To our knowledge, indicators of Se status and lipid peroxidation have never been examined in Ebola patients. However, selenium has apparently been used with great success by the Chinese in the palliative treatment of an infectious hemorrhagic fever. Although this did not involve Ebola virus, there are a number of different hemorrhagic fever viruses, and they may share common mechanisms. This example provides yet another reason to expect that pharmacological doses of selenium may also have some benefit in Ebola infections." [Emphasis mine]


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