Anti-coagulants

[Hutan]

There have been a number of case studies suggesting anti-coagulants are useful treatments for long Covid, and a number of doctors are prescribing these, singly or as a 'triple therapy' to long Covid patients, including children.

The treatment has tended to be promoted along with the hypothesis of microclots, although it's possible anti-coagulants could be useful even if the microclot idea is baseless.

I thought it would be useful to have a thread where we can look at the evidence of benefits and the risks.

 

[Hutan]

This study on long Covid risk factors
Deriving and validating a risk prediction model for long COVID, 2023, Jeffrey et al
found that parenteral anticoagulants reduced the risk.

It's pretty significant, too:

This really warrants a rapid research effort. If it disproves it it's still good, we need to know and so far there are zero treatment paths.

I checked and for the micro-clot treatment by Pretorius's team, I can't say for the antiplatelet drugs, but the anticoagulant (Apixaban) is taken orally.

It is likely that the people given anticoagulants during their Covid-19 illness in this study were different to the people who were not given anticoagulants. For example, perhaps people given anti-coagulants had co-morbidities that would result in any persisting symptoms being attributed to their pre-existing diseases, rather than long Covid. @LarsSG pointed out that there could be odd things going on, perhaps with an association with age (older people more likely to be on an anticoagulant and to have symptoms attributed to things other than long Covid), with a wonky adjustment for age.

Looks potential interesting, but it also looks like they included a lot of variables and with p = 0.022 this could just be noise. It also looks like being a carehome resident and having dementia are also protective; perhaps there is a correlation with those factors and parenteral anticoagulants use or their adjustment for age has gone wonky somehow.

 

[Hutan]

On that Jeffrey et al thread, there were some accounts of improvement while on anti-coagulants:

@Andy noted his experience with injected anticoagulants:

...
A n=1 anecdote. Some might recall that when I experienced a c.6 month partial but significant remission around 4 years ago, it had followed my c.6-week long stay in hospital for gallstones/gall bladder issues. Obviously masses of different other things also happened at that time (gall bladder removal, anaesthesia, sedation, several endoscopies, hospital food, several doses of antibiotics, etc) but it did also include, as part of that length of stay, routinely given injected anticoagulants. So maybe it was the anticoagulants, maybe it was something else, maybe it was everything.

@Michelle noted her experience of some improvement while on heparin but did not find that with oral anticoagulants (warfarin and rivaroxaban):

I've written in an earlier post that I experienced an improvement in my symptoms while on low-dose heparin. But like you, it was part of a number of treatments and it's hard to disentangle what was causing what. And I, too, am following the microclot/anticoagulate line of enquiry with great interest. Though oral anticoagulants such as warfarin and rivaroxaban have had no impact at all on my ME/CFS symptoms.

 

[oldtimer]

Long story, but two weeks ago in A&E I started taking a low dose of Eliqis (apixaban) after a single episode of atrial fibrillation. The first 36 hours were uneventful then I had the most horrendous side effects:
Muscle and joint pain off the charts.
Couldn't sleep for more than a few hours a night.
Extreme anxiety.
Moving slowly, thinking slowly.
Already severely dry eyes stinging so badly I was flushing them constantly.
Couldn't get dressed, eat much or clean my teeth
at all.
Extreme dizziness, light-headedness.

I weaned myself off it over the next four days and after a few more days I was back to normal.
I'm still waiting for the cardiologist to return my calls!

These are not drugs to be taken lightly. The side effects, risks and drug interactions can be serious.

 

[Kitty]

The side effects, risks and drug interactions can be serious.

And silent, that's something else to take into account. People don't always know they're bleeding internally.

 

[Denise]

I've mentioned it before and hope it's okay to bring up again. (Mods please delete if it's not okay)

Has anyone talked to/studied the PwME who have been on anticoagulants, low dose aspirin, and/or statins to see how/if their level of function has changed since they started taking them?

EDITED per @forestglip mention of OMF study.

Has anyone talked to/studied PwME who have been on anticoagulants, low dose aspirin and or statins since before the pandemic began to see how/if their level of function has changed since they started taking them?

 

[forestglip]

I've mentioned it before and hope it's okay to bring up again. (Mods please delete if it's not okay)

Has anyone talked to/studied the PwME who have been on anticoagulants, low dose aspirin, and/or statins to see how/if their level of function has changed since they started taking them?

The recent OMF paper that surveyed patients found that the anticoagulants "Enoxaparin or Unfractionated Heparin" were the treatment with the highest number of people reporting feeling "much better" at about 30%. (6% reported feeling "much worse".) Also highly rated in long COVID.

Though there's all the potential biases of this kind of study and small sample sizes for this treatment: 34 in ME/CFS and 25 in long COVID.

 

[Denise]

The recent OMF paper that surveyed patients found that the anticoagulants "Enoxaparin or Unfractionated Heparin" were the treatment with the highest number of people reporting feeling "much better" at about 30%. (6% reported feeling "much worse".) Also highly rated in long COVID.

Though there's all the potential biases of this kind of study and small sample sizes for this treatment: 34 in ME/CFS and 25 in long COVID.

Thanks @forestglip - I should have worded it as taking these meds since before the pandemic.... (I will edit my post.)

 

[Peter T]

I took low dose aspirin for a number of years and my GP substituted that with clopidogrel about a year ago.

Though I have seen a very slow gradual improvement in my ME over this time I have no reason to specifically relate that to these medications.