Another covid question Re blood clotting/high risk - MPN Voice

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Another covid question Re blood clotting/high risk

Jane8143 profile image
10 Replies

So. It's finally got me...

At the moment, it just feels like flu with a bad chest (not terrible, just raspy and sore). I'm 4 vaccinated so hopefully it doesn't get wildly worse. But I'm only on day 2 and obviously panicking about the risks of it getting severe. I am struggling to understand exactly what the blood clotting risk is/why we are high risk/ what the immediate dangers are?

I'm ET, Calr, 41, and only on 50 mg of Aspirin a day. Should I up it to 100 for a few days to keep blood thinner??

My husband it away for the next week and I have two young kids to look after and worried about needing hospital etc.

Are the clotting risks only higher if you're in hospital in the first place??

You'd think after nearly 3 years, I'd understand the science a bit more but I don't...

Thanks for your help.

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Jane8143
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10 Replies
AnitaJ profile image
AnitaJ

Hi Jane, I have ET and have the same concerns as you do. However, as if you are registered as "extremely vulnerable" because of the pandemic you can get anti-viral drugs by contacting 111 or your GP. Sorry I don't know the answers to the questions you have but I hope that information helps. All the very best.

Cja1956 profile image
Cja1956

I agree with Anita. You need to call your gp and ask for the antiviral. It works best if you get it at the beginning of your illness. Good luck to you and feel better soon.

Mazcd profile image
MazcdPartnerMPNVoice

hi Jane so sorry to hear that Covid finally got you, you are entitled have the antiviral medication, mpnvoice.org.uk/news/fast-a...

Take care Maz

hunter5582 profile image
hunter5582

When I had COVID back in January, I was not flagged as being particularly high-risk due to having PV. I was consider at risk due to age >65 and was able to access monoclonal antibody infusion based on age.

Suggest you run your question about thrombosis risk by your care team for a case-specific answer. With my case of PV (erythrocytosis + thrombocytosis successfully treated with Pegasys) I was not considered to be at particularly high risk. It really is best to get a case-specific answer to your question rather than a more generic answer that my not apply to you. Also note that the course of the illness/severity for people with MPNs does not tend to be any better/worse than anyone else unless you have a compromised immune system. I fared about the same as anyone when I had COVID.

All the best. Hope you feel better soon.

Elizka profile image
Elizka

A good friend of mine who happens to also be a surgeon recommended taking Pepcid right away when you get covid. northwell.edu/news/the-late...

Vagal nerve damaged by virus (why pots syndrome and long term covid)

Famotidine (pepcid) helps vagal nerve 80mgs TID-QID (from Cornell)

EPguy profile image
EPguy in reply to Elizka

I've been wondering how Famotidine (Pepcid) worked out. I bought a whole bunch of it after we had covid early 2020. Thanks for the reference.

"Estimated 50% reduction of overall baseline symptom scores were achieved at 8.2 days ...for famotidine and 11.4 days for placebo"

Interesting measurement they did: "On day 7, fewer patients on famotidine had detectable interferon alpha plasma levels "

Those of us on IFN would likely mess with this result.

--

Details: the pts were unvaxed so it could be different for vaxed. Also they used high doses.

gut.bmj.com/content/71/5/879

George1976 profile image
George1976 in reply to EPguy

Thoughts on possibility that Pepcid interacts with Pegasys? In 2021 I had a bad neuropathic reaction after my last dose of Pegasys and was on Famotidine for reflux at the time. Had not been on famotidine during 4 years of Pegasys previously. Some possibility that I had or been exposed to Covid in 2020 while on weekly 45mcg Pegasys.

EPguy profile image
EPguy

As others have noted, if you're very worried about the risk you should seek the anti virals. This is Paxlovid or Molnupiravir. These reduce the risk and usually shorten the course of the disease. But you need to start ASAP if you're qualified to get it.

However the other option, monoclonal antibodies, are no longer effective, so the antivirals are the place to look:

"New coronavirus variants rendered the last remaining monoclonal antibody treatment useless.. (since it's) not expected to neutralize (the current) Omicron subvariants BQ.1 and BQ.1.1.,"

nbcnews.com/health/health-n...

If your 4th vax is recent that also helps.

--

Elizka's link to the Pepcid trial is neat, I would take some if I got Covid.

Inclement profile image
Inclement

I note you say you are only on aspirin and I understood the antivirals were only available to those on Hydrea or similar medication. Maybe someone could confirm otpr otherwise? In any case I hope you make a speedy recovery.

Jane8143 profile image
Jane8143

Thanks everyone for your comments. Luckily, it didnt get too much worse. I upped my aspirin for a few days just in case (I figured it's such a low dose anyway ). Now a week in, and seem to be much stronger again. Hope you're all staying well too.

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